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our NHS

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Clinical Pathway Group Reports 2008

our NHS

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CONTENTS

PAGE

Foreward From Good to Great Birth Clinical Pathway Group Childrens Clinical Pathway Group Staying Healthy Clinical Pathway Group Urgent Care Clinical Pathway Group Planned Care Clinical Pathway Group Mental Health Clinical Pathway Group Long Term Conditions Clinical Pathway Group End Of Life Clinical Pathway Group

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FOREWORD
I would like to personally thank all those colleagues who

have given their time to contribute to the Our NHS Our Future review and to the reports of our clinical pathway

The challenge for

groups. I believe that this has been a very important exercise for us, as it has re-emphasised the importance of clinical leadership, at a time when we are trying to ensure that the success of the NHS is measured in terms of the outcomes for patients; the quality and safety of services. This report brings together the reports from our eight clinical pathway groups. At the end of May we will be publish our response to Lord Darzis review. We hope that Healthier Horizons for the North West will use to spark a debate that will lead to real change and improvements in health and health care for people in the North West. The reports from our clinical pathway groups and the feedback we have been given during this process have helped us to formulate our vision more clearly. Thank you to the chairs of the clinical pathway groups for their support for the review. In particular I would like to thank Dr Steve Ryan, medical director at Alder Hey Childrens Hospital, who as chair of the childrens group took on the role of chair of chairs and has been a very enthusiastic ambassador for Our NHS Our Future in the region and at a national level.

the next decade must be to improve quality and making sure additional resources provide the best possible services for patients.

Mike Farrar Chief Executive NHS North West


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our NHS

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From Good to Great


Over the past seven months, the NHS in the North West has been part of a once-in-a-generation review of its services. Launched in September 2007 by Lord Ara Darzi, Our NHS Our Future (ONOF) aimed to put clinicians and their patients at the heart of the NHS; improve patient care and safety; ensure care is more accessible and convenient; and establish a vision for the future of the NHS in time for the 60th anniversary in July 2008. In the North West, we saw this as an opportunity to improve the quality of care for our region and close the health gulf which exists between us and other parts of the country. In some areas of our region, people can expect to die 10 years earlier than in the most prosperous areas of southern England - and this gap in life expectancy is preventable. Overall standards and the quality of care in the NHS are improving, thanks to the hard work of healthcare staff. Our challenge now is to move NHS services in the North West from good to great; and at the same time make sure that front-line staff such as doctors, nurses, therapists and social care staff are leading these improvements in the interests of their patients and clients. Over the last 10 years, there has been a big increase in spending in the NHS with dramatic reductions in waiting times partly due to increased numbers of staff and new ways of working. There have also been improvements in the quality of care, for example for patients with heart disease and cancer. Survival rates for people with heart disease have improved because of better treatment in primary care, more widespread use of preventative treatments, such as cholesterol-reducing drugs, more people quitting smoking and improved quality of interventions. Generally, the focus over the last 10 years has been quantitative; putting more money, more staff and new equipment into the system. Whilst this has led to some dramatic improvements, the challenge for the next decade must be to improve quality and make sure additional resources provide the best possible services for patients; and to make big improvements in the health of our citizens. How did the review work? We established clinical pathway groups to look at eight key health issues that affect people at different stages in their lives, each led by an expert from health or social care. The groups covered: birth, children, staying healthy, long-term conditions, urgent care, planned care, mental health and end of life. They looked at what can be done to ensure best practice is used universally in our region, so that people can get the best standards of care. As part of this process we asked NHS staff, patients, the public and stakeholder organisations about their views. The final reports from our groups have informed our vision for NHS services in the North West. In the North West we took a programme management approach to delivering the review. The diagram below outlines this approach, and shows how far reaching the programme of work was. We have followed the RAID model; Review, Agree, Implement, Demonstrate and Disseminate. NHS North West NHW Review Programme Structure

NHS NW REVIEW BOARD PUBLIC ENGAGEMENT Constitutional Debate - (July 2008) CLINICAL & STAFF PARTNERSHIP

DELIVERATIVE EVENT (March 2008)


SCENARIO PLANNING

BIRTH

CHILD

STAYING HEALTHY

MENTAL HEALTH

URGENT CARE

PLANNED CARE

LONG TERM CONDITIONS

END OF LIFE

North West Congress (November 2007)

CLINICAL PATHWAY GROUPS

PCT

NWAS

TRUST

MENTAL HEALTH

FTs

STRATEGIC PARTNERS

PRIMARY CARE

SOCIAL ENTERPRISES

VOL. SECTOR

LA

IND. SECTOR

OTHERS

INDIVIDUAL ORGANISATION ENGAGEMENT (CEO LED)

SHA FOCUS GROUPS

Reasons for change There are still major inequalities in health and wellbeing in our region. Our country lags behind many countries in treatment outcomes. For example, although we have reduced deaths from heart disease, other countries have moved more quickly to adopt new treatments such as angioplasty. Here in the North West we still have the highest rates for early deaths from heart disease and stroke, for long term mental health problems and alcohol-related hospital stays. A baby boy born in some parts of our region will live 10 years less than a baby boy born in other parts of the country that enjoy better health. The NHS as a whole is behind the rest of the EU for survival rates for cancer. 77.6% of women in England diagnosed with breast cancer will still be alive after five years - but this is 82.7% in France and 79.5% on average across Europe. For lung cancer, only 8.6% of people will be alive five years after diagnosis - but this compares with 12.8% in France and 10.2% across Europe. In the North West alone there are 1,334 excess deaths from cancer each year, compared to other parts of our country. But even across the NHS there are unacceptable variations in the quality of care people receive. Three years ago, a national report on stroke care set out the quality standards for care we should expect across the UK and found that many hospitals fell short. A further audit published in 2007 showed there had been little overall improvement; there were some notable exceptions to this in the North West, however in some areas the quality of care had deteriorated. Even in the best performing part of the country, the North East, only 60% of hospitals are meeting a range of standards. The NHS can be inconvenient and difficult to access As a region, we have far fewer GPs compared to other regions in the country. On top of all this we know that the convenience of services provided to patients needs to improve. An Ipsos-Mori survey conducted in 2006 showed that 26% of patients were dissatisfied with the provision of urgent out-of-hours care. We know that people want more convenient services - along the lines of the convenience they now experience from supermarkets, airlines and other service companies. Patients often do not know what to do, where to go or who to contact if they have a more urgent - but not life threatening - illness or injury outside normal GP hours. We also know that for more routine matters some patients find it difficult to see their GP in normal opening hours.

Disease patterns are changing and so is the population As the population ages and lifestyles generally are becoming unhealthier, we are seeing a large increase in the numbers of people with long term conditions. Long term conditions include diseases such as diabetes, heart disease, asthma, respiratory problems, AIDs and cancer. We need to get much better at treating patients with these problems. Patients with long term conditions are responsible for nearly 8 out of 10 inpatient bed days. More treatment should be available for these patients within the community so they can avoid needless hospital admissions. If we can get this right, we can provide better control for them of their condition. New technology and treatments are on the way There are new technologies around the corner and we want to be able to take advantage of them. Wireless technology will allow an increase in remote monitoring of conditions, for example the Smart Shirt, which monitors heart rate and temperature and relays results to an operator. The expansion of non-invasive surgery is reducing the risk of infection and the need for lengthy post-op recovery. It is clear that we are at a point where changes need to be made to the way that health services are delivered. There are some great opportunities to improve the quality of services; and these need to be led by front-line staff on behalf of their patients. What have we learnt? The feedback from the engagement process with patients and the public highlighted a real pride in the NHS. There is support for the aims and recommendations of the clinical pathway group reports. The main issues raised by our patients and the public were: Getting the basic things right, such as a clean environment and competent staff More flexible services to fit in with their lifestyles Concern over levels of funding and resources Waiting times for treatment Getting the latest treatment and drugs More needs to be done to help people make healthier choices More self-testing kits and health checks People should be penalised in some way for regularly missing appointments without good cause

Our stakeholders and partners have been extremely positive and have welcomed the opportunity to influence the outcomes of the review. It is clear that health services are provided most effectively when the NHS, local authorities and the voluntary sector are working jointly to commission and provide health and social care. The main points raised by our stakeholders are: Support for Lord Darzis vision for the NHS in the 21st Century i.e. fair, personalised, effective, safe, tackling health inequalities and locally accountable Build on existing strengths and best practice Tackle health inequalities and barriers to accessing services Ensure personal and clinical services are designed around patients Integrate public sector working with NHS practice Focus on prevention Develop and nurture relationships on all levels with partner organisations A long term approach to developing and delivering services will deliver efficiency and value for money Our stakeholders and partners are eager to work to add value to NHS services Stakeholders are willing to work towards patient-focused, high quality services that offer value for money Common themes The clinical pathway groups highlighted many examples of excellent practice in each of their areas and considered reasons why this good practice is not widespread across the region. A number of issues common to all the groups including: Wellbeing, prevention and self care are increasingly important, both on a population and an individual basis The quality of some services is patchy across the North West. Quality standards and evidence based practice should be agreed for all our services Everyone should have the same opportunity to access treatment, regardless of where they live Bold, inspirational clinical and managerial leadership is required to deliver change Organisational boundaries and funding incentives can hinder high quality pathway care Commissioning across sectors needs to be more flexible to allow changes in service provision Information and data systems need to allow data to be shared across organisations and sectors Our workforce needs to be more flexible so that it can operate across care pathways not organisations We should break down any barriers between professions and care settings to create a more personalised and tailored care setting Changing pathways of care are inevitable as new ways of taking services closer to patients develop and new technologies arise that need highly specialised skills and facilities

Acting on the recommendations of the clinical pathway groups Healthier Horizons for the North West sets out the considerable progress that has been made in the region towards better healthcare and health for our citizens. We recognise that it is time to steer a new and more radical course and to focus much more on promoting health and preventing ill-health. Many of the recommendations from the clinical pathway groups need to be implemented over a 12 month period in order to make today healthier. Healthier Horizons sets some short, medium and long term targets for commissioners of services. We hope that these reports will be a useful resource for our clinical colleagues and social care staff, to help them begin exploring how to implement changes that will improve the standard and quality of care. The next step is to involve NHS clinicians and leaders, frontline health and social care staff, key partners and stakeholders so that we have a coalition for moving forward. For more information If you would like to be added to the distribution list for further updates about Healthier Horizons for the North West and the North West vision for health and health care, please email: cathy.stuart@northwest.nhs.uk

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Birth Clinical Pathway Group


Normality at the centre of responsive and equitable maternity care
EXECUTIVE SUMMARY
The North West birth clinical pathway group has focused on the development of a core maternity pathway, which will champion and support normality in maternity care. The group presents a practical pathway of care set in the context of current policy direction. Central to the work is the named midwife who is part of a midwifery team, offering services in community settings with access to specialist services in consultant led units. The focus of the midwifery team is to provide care that is responsive to the different needs of women and their families; and to ensure that women receive appropriate information and support to make informed choices throughout their care. The group considered the options for place of birth and has developed principles for different models of provision.
Particular attention is given to ensure that vulnerable women are able to access core support services, as well as the specialist services they need. In developing an extended public health element to the midwifery role, the recommendations from the Saving Mothers Lives enquiry (2003-2005) have been taken into account, along with the new PSA target for early assessment in pregnancy. Commissioning partnerships between local authorities and the health service will need to be strengthened to ensure the provision of maternity care in community settings; and shared roles to offer support services that span across education, social care, health, independent and third sectors. Services should be accredited and monitored in
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terms of safety and quality. The value of a shared electronic record to improve communication across community and hospital services is emphasised as a key enabler for this model of care. One of the main barriers to progress is the need to establish a tariff to support community based midwifery led services, and more specialist services, which reflect the complexity of care for women with multiple problems. Workforce changes will include an appropriate number of midwives and maternity support workers, to provide an extended and more personalised service for women. Different models of medical training will need to be considered to support cover for obstetric services.

The main recommendations contained in this report are: The development of a core maternity pathway, which promotes normal birth and is delivered in a community setting An enhanced role for the midwife that includes a public health approach to care along with greater autonomy in midwifery led services Strong partnership working between the community, hospital, social services, education and the third sector, to ensure those women who require specialist services can access the services they need without delay The promotion of shared decision making between women, midwives, general practitioners, consultants and other specialist services The need for business processes to support this model of working, including shared electronic records, an appropriate tariff and a dedicated national telephone line that will direct women to local services The importance of effective leadership amongst professionals providing maternity care

Preconception/positive pregnancy test Everyone should have access to generic preconception advice that is available as part of the school and college curriculum, in pharmacies, childrens centres, extended schools, general practice and even leisure centres. It should include advice on: Stopping smoking Alcohol Healthy weight, diet and exercise Folic acid Medicines management Sexual health and contraception Illicit drugs Mental health promotion The value of preconception advice is recognized, particularly for migrant women, obese women, women undergoing IVF; and those with social health problems and long term conditions such as diabetes, epilepsy, cardiac disease, autoimmune disease and mental health problems (CEMACH 2000-2002, CEMACH 2003-2005). These more vulnerable women may be advised to access their existing services or be referred to specialist services before they conceive. Raised public awareness in colleges, schools, shopping centres, childrens centres, general practice, through local health trainers and so on, will help support women and their families to understand what to expect in pregnancy, and in caring for an infant, including: Normal birth and the choices available on the core maternity pathway What happens when specialist services are required How midwives and other health professionals can help women make appropriate and safe choices during pregnancy How to access information about pregnancy and caring for an infant When a woman has a positive pregnancy test, she will be able to contact a midwife at a minimum in the following ways: A national telephone line, which will direct women to local midwifery and pregnancy related services, including termination of pregnancy services Information available with pregnancy kits Through their local pharmacy Through their general practitioner Through their childrens centre Through an IVF unit Through early pregnancy units The midwife will be able to access all relevant information from primary care records, to ensure that the woman has access immediately to appropriate antenatal care. This is particularly relevant if a woman has an existing medical condition, is vulnerable or disadvantaged (CEMACH 20002002).

Introduction
The work of the birth clinical pathway group in the North West has been set in the context of existing policy direction for maternity care, which has made the case for change. The report draws on a rich evidence base outlined in the reference section, Appendix 3. The group is committed to a practical and flexible pathway for women that embraces partnership working, enhances the role of the midwife for normal birth, and ensures a responsive and equitable service for women in the North West. According to Hospital Episode Data, in 2006 approximately 84,600 babies were born in the North West, mostly within 22 hospital trusts. Four of those hospital trusts currently offer stand alone midwifery led birth centres as a choice for women. Co-located midwifery led units are in place in some obstetric units and further co-located units are planned. The numbers of home births vary between PCT areas from as low as 1% to as high as 10%.

Core Maternity Pathway


The core maternity pathway starts with preconception care and a positive pregnancy test and finishes six weeks post delivery. The seven sections below describe a service that the birth clinical pathway group recommends as a minimum standard for adoption across the North West.

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Named midwife and the role of the midwifery team Every woman will be assigned to a named midwife, who will be the womans key contact during pregnancy. A team management approach to the case load of the named midwife will be in place to ensure continuity of care, particularly when the named midwife is not available. Supervisors of midwives will play a role in supporting the midwifery team (CEMACH 2003-2005). The named midwife will be part of a wider midwifery team, which will offer cover for each other and retain competences to provide care throughout the core maternity pathway, including antenatal, intrapartum and postnatal care. The midwifery team will be supported by specialist midwives appropriate for the area they serve. It will be the responsibility of each individual involved in the womans care, to ensure that electronic and paper records are kept up-to-date. The team will be key to co-ordinating the womans care. They will be linked to general practice, hospitals and childrens centres, and work closely with health visitors and other healthcare professionals and support workers, to ensure a multi-agency approach to care. The midwifery team will have a pivotal role to play in tackling health inequalities, and will build the capacity to reach out to disadvantaged women. They will deliver services that are designed to be responsive to all communities, thus ensuring best outcomes for mother and baby (CEMACH 2003-2005). The team will have a public health responsibility to provide: Breast feeding support and advice (UNICEF Baby Friendly) Support with smoking cessation during pregnancy Mental health assessment and direct access to a local mental health pathway (CEMACH 2000-2002, Antenatal and Postnatal Mental Health Guidelines, NICE ) Weight management advice with access to dietetic services, local authority services and the voluntary sector (CEMACH 2003-2005). The midwifery team will work in partnership with the consultant led obstetric team. Where an opinion is sought from an obstetric unit, this will not automatically result in a transfer of care. Unless otherwise indicated, women will continue on the core maternity pathway once concerns about care have been resolved (CEMACH 2003-2005, Antenatal Care Guidelines NICE, Maternity Matters). Antenatal and postnatal care should be delivered by the midwifery team, in a setting agreed by the woman and midwife. This may be at a childrens centre, in general practice or the womans home. It may be in another setting that provides core maternity care, such as an obstetric unit or stand alone birth centre, depending on local commissioning arrangements. All women should be supported by a midwife throughout labour and birth. This may not be the named midwife, but should if possible be a midwife the woman has met before and who is part of the midwifery team. Women in labour should have one to one care (Intrapartum Guidelines NICE, Maternity Matters). A woman should not be left alone in labour, with the exception of agreed short periods, or if the
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woman requests to be left alone (Intrapartum Guidelines NICE). The midwifery workforce will need to reflect a commitment to this level of service (Safer Childbirth). In order to enable midwives to undertake this role there will be a requirement to: Maintain effective communications with the wider team Develop caseload weighted workloads according to the needs of families Develop clear thresholds for the midwifery role, which enable close multi-agency working with other key professionals. For example, accessing emergency psychiatric services following an acute episode and going on to work closely with community mental health service, whilst retaining the principles of the core maternity pathway and offering the woman the specialist services she requires (CEMACH 2000-2002) Make links to the wider community, including education and social care services, to address issues such as contraception and teenage parenting and to promote wellbeing (CEMACH 2000-2002) Work in the community to access services where women may wish to receive their care (Maternity Matters) Ensure there are sufficient maternity support workers or similar roles, to assist midwives, by undertaking a range of support tasks that enhance the service from the midwifery team (Maternity Matters) Be trained to undertake risk, needs, preferences and benefits assessments and develop comprehensive personalised care plans Undertake training in motivational interviewing and brief intervention skills, which will build capability to tackle difficult lifestyle questions and offer advice or information in a tailored way GPs will continue to see those women who choose to visit them following a positive pregnancy test. They will advise women who have pre-existing conditions, particularly if they are taking medication that may need to be changed during pregnancy. At the earliest opportunity, the GP will refer the women on to the midwifery team and access specialist services where appropriate. Throughout pregnancy the GP will continue to provide healthcare beyond pregnancy issues. The GP will not be expected to respond to home births or births in a stand alone birth centre where medical intervention is required. In such circumstances, women will be transferred to a consultant led obstetric unit. In order for this process to be effective, the midwife must be able to access the whole patient record in general practice and refer to the GP for advice.

Antenatal care All women will be encouraged to undertake their first appointment at or before 12 weeks, and at that appointment will be encouraged to agree a care plan (Antenatal Care Guidelines NICE, Maternity Matters). All women will be offered an individualised risk, needs, preferences and benefits assessment. Discussions regarding the choices available to the woman and her family throughout pregnancy and birth, will be based on this and subsequent assessments. Initial assessment will also take into account any issues regarding safeguarding. All women will be offered care based on the NICE Antenatal Care Guidelines, unless their particular circumstances or preferences indicate otherwise. Women who require specialist services following risk, needs, preferences and benefits assessment will receive individualised care, alongside the core maternity pathway. Where demand for services makes this viable, dating and anomaly scans should not require women to attend hospital. Provision should be made in a community setting to undertake these procedures (Our Health, Our Care, Our Say, Maternity Matters). Where there is sufficient demand, specialist hospital services should provide outreach specialist staff to support women and midwives outside a hospital setting (Maternity Matters). The midwife will discuss choices of place of birth based on the risk, needs, preferences and benefits assessment, both in early pregnancy and at the pre-birth visit. Choice of pain relief should be included in these discussions (Maternity Matters). The midwifery team will encourage women and their partners to attend parent education classes, directing them to local services that may be provided by the team, hospital services or the third sector. Birth Women will be able to contact their named midwife or midwifery team using a local 24 hour telephone service as a single point of access. The named midwife, or another midwife who is part of the team and known to the woman, will undertake a risk, needs, preferences and benefits assessment in early labour. This may be in the womans own home or in the midwifery led unit. The midwifery workforce will need to reflect a commitment to this level of service. Women should have a range of choices during labour and birth, including pain relief and the use of birthing pools (Maternity Matters, Intrapartum Guidelines NICE). If complications develop and transfer is required during labour, clear and agreed local protocols for transfer must be in place. Decisions should be made according to the needs of, and in partnership with, the woman and her family (Maternity Matters, Intrapartum Care Guidelines NICE). Regional audits should be in place to monitor the outcomes for mother and baby of transfers during labour. Communication flows should be in place between health professionals, women and other agencies including opportunities to debrief and feed back.
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Postnatal care The named midwife or a member of the midwifery team will visit the woman in her home, on the day following discharge from the place of birth (Postnatal Guidelines NICE). A risk, needs, preferences and benefits assessment will be undertaken, and a programme of postnatal support put in place based on NICE Postnatal Care Guidelines. This will include referral to specialist services if required. The health visitor will be introduced to the family at a time appropriate to the needs of the family. For vulnerable women, this referral will take place in the antenatal period (NSF for Children, Young People and Maternity Services). Where antenatal care has been undertaken in a childrens centre, the health visitor may already be known to the family. Handover from midwife to health visitor should be carefully managed, making use of electronic information, and responsive to the needs of the woman and her family. Postnatal care will be delivered by the midwife and health visitor in a settling agreed by the woman and health professional. This may be at a childrens centre, in general practice, the womans home or in another setting that provides core maternity care, including a birth centre or hospital setting depending on local commissioning arrangements (Maternity Matters).

Susans Story
Susan is 15 and discloses to her form tutor that she is pregnant. The teacher encourages Susan to inform her parents and arranges to meet the family the following day. At the meeting the teacher has invited the school nurse with Susans consent. Susan is keen to have her baby and her mother is supportive. However, Susan is not sure when her last period was. The school nurse gives Susan the contact details of the midwifery team along with Connexions and Sure Start Plus. Susan and her mother contact the midwife at the local childrens centre and the midwife arranges to meet Susan the same day. The midwife takes a full history and undertakes a needs, risks, preferences and benefits assessment with Susan. Susan and the midwife agree a care plan. Susan attends an obstetric unit for an ultrasound scan, which confirms a pregnancy of 32 weeks. Susans bloods are normal and she has no medical or surgical history. The team and Susan agree to continue Susans care under the midwife in close partnership with the hospital obstetric team. Susans midwife is able to put her in touch with education and social services and introduces her to her health visitor before the baby is born. Susan goes into spontaneous labour at 38 weeks and is admitted to the co-located unit by a member of the midwifery team, as agreed in her care plan. She is supported in labour by her mother and has a vaginal delivery. Susan has skin to skin contact and offered to breast feed her baby. Susans breast feeding continues on the post natal ward. Susan is discharged on the third day, and is visited on the same day by the maternity support worker who provides education and support in maternity skills. The Sure Start team and education services create a package for Susan to return to full time education.

Newborn Examination of the newborn should be carried out only by midwives who have undertaken the neonatal examination training module. All midwives should be encouraged to undertake this qualification. The examination should be carried out within 72 hours of birth. Perinatal networks should be developed so that the needs of neonates requiring specialist services are met. This should include provision for mothers where neonates are transferred to specialist units. Newborn screening should be provided in accordance with recommendations from the National Screening Committee. All newborns should have their own casenotes. The authors of this paper would like to recommend further dedicated work from colleagues involved directly with neonatal services. Specialist services There are three types of specialist services that women may need to access as part of their pathway of care: generic high risk, maternal medicine and regional specialist services. Generic high risk: obstetric services for women with previous obstetric complications, for example, previous Caesarean Section, stillbirth, recurrent miscarriage and previous pre-eclampsia and so on. Women accessing these services will remain on the core maternity pathway and access specialist services as required in the consultant obstetric unit or elsewhere. Maternal medicine: high risk obstetric services should have a named consultant or group of consultants responsible for maternal medicine, for example, endocrinology, mental health, substance misuse, hypertension, obstetric anaesthesia, epilepsy and infectious diseases. These services should be configured according to case mix, resources and local expertise, and provide preconception counselling for complex cases. The care of these women will require a multi-disciplinary approach including named consultants (obstetric and other), specialist midwives, specialist nurses and other allied staff. There should be clear communication and shared care with the midwifery team and the general practitioner (CEMACH 2000-2002, CEMACH 2003-2005). Regional specialist services: these include for example, obstetric cardiac services, respiratory services, rheumatology, fetal medicine and complicated multiple pregnancies. Such services will provide preconception counselling for complex medical conditions, and where appropriate joint multi-disciplinary clinics including obstetricians, other consultants, specialist midwives, specialist nurses and other allied staff for antenatal and postnatal services (CEMACH 2000-2002, CEMACH 20032005). Women accessing these services may still be suitable for birth in their local referring unit. There must be clear communication with women and local services in this regard. Women accessing high risk, maternal medicine and specialist regional services should have an agreed, detailed care plan including management for the antenatal, intrapartum and postpartum periods. The care plan should contain names and contact details of all the key professionals involved in the care of the woman and her
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family (CEMACH 2000-2002, CEMACH 2003-2005). Clinical networks should be established for perinatal mental health services (Antenatal and Postnatal Mental Health Guidelines, NICE, CEMACH 2000-2002). Where urgent care is required for acute psychiatric episodes, the midwife or consultant will refer directly to a named psychiatrist, and the midwife will continue to work closely with the community mental health services throughout the pregnancy. Such cases will need to be considered in the named midwifes work plan. Guidelines and care pathways should be in place for common conditions during pregnancy (CEMACH 2003-2005). Routine risk, needs, preferences and benefits assessment will pick up families whose baby may require intervention following birth, either through a maternal medical condition, a fetal medicine condition, expected neonatal issues or social circumstances. Such women will access local or regional support services as required, while remaining on the core maternity pathway as routine. It is anticipated that these women will give birth in a consultant obstetric unit with appropriate skilled neonatal intensive care on site. All midwives will be trained in newborn life support and where transfer is required, this should be undertaken by paramedic ambulance. In response to a 999 call, women with obvious pregnancy related conditions should not be taken to a unit that does not have an obstetric service. Women who are identified as having pregnancy related problems on examination on arrival at an accident and emergency unit, should be stabilised as appropriate to their condition and urgent advice obtained from on-call teams. Accident and emergency units with no on-site maternity services should have policies and procedures in place, so that obstetric advice can be accessed in a timely and appropriate manner. These policies and procedures should be drawn up in joint consultation with the nearest consultant obstetric unit, and the midwifery team and GPs made aware of the process. In the event of a transfer from a midwife led stand alone birth centre, or home birth due to complications of labour, transfer should be made by ambulance to the nearest consultant led obstetric unit. The womans GP or out of hours service would not be expected to be called in these circumstances. Within health communities midwives with specialist interests in vulnerable groups, such as substance misuse, asylum seekers and refugees, should be identified and easily accessible for women (CEMACH 2000-2002, CEMACH 2003-2005, Maternity Matters). Women should have timely access to a specialist midwife in breast feeding where there are feeding problems that cannot be satisfactorily resolved by the midwifery team (UNICEF Baby Friendly). After the loss of a baby, women and their families will have the opportunity to be debriefed and have counselling by a senior member of the obstetric team. Midwives and health visitors will be trained to offer post termination and bereavement support to women and their families. Every midwifery led birth centre or obstetric unit will have access to hospital bereavement services, and also have staff who have undertaken basic training.

Joans Story

Stand alone birth centres Provide the same service as a home birth and therefore the same principles should apply Stand alone birth centres should be commissioned in addition to, and not as an alternative to co-located units Facilities should be available within a reasonable distance from a womans home, and where geography does not support this, increased home births should be considered Transfer policies and procedures must be developed locally and be robust Obstetric, anaesthetic and specialist paediatric input are not available for stand alone birth centres and women and babies requiring specialist support will be advised to transfer to an obstetric unit Clinical governance arrangements should be shared with a local consultant led obstetric unit. The obstetric unit should be available to offer telephone advice as appropriate Co-located birth centres Every consultant obstetric unit should have a co-located birth centre to enable women choice of a home from home experience, but with access to on-site emergency obstetric care The workforce should be led by a consultant midwife, be integrated and rotate with the obstetric unit, and promote a philosophy of normal birth (Safer Childbirth 2007) Clinical governance arrangements should be shared with the consultant led obstetric unit The co-located centre should be a discreet unit but be adaptable to meet the needs of women if they require more specialist care Obstetric unit The consultant midwife should be key in fostering normality on the consultant led obstetric unit (Safer Childbirth 2007) There is evidence to suggest that increased consultant presence is linked to a reduction in fetal distress, which can lead to neonatal mortality and disability (The future role of the consultant, RCOG, December 2005) Recommendations set out in Safer Childbirth 2007, particularly in relation to workforce, should be implemented There must be facilities for providing critical care for women who need it that avoid where possible, the mother and baby being separated (Safer Childbirth 2007) Units should use an early warning scoring system for all acute obstetric admissions, including admissions in early pregnancy (CEMACH 2003-2005) Regional specialist services for complex maternal and fetal medicine, should be provided in suitably equipped units, by adequately trained staff to ensure the highest standards of care

Joan, age 32, has had epilepsy since she was 14 and was very stable on single therapy. When she and her partner John, decided to start a family, she visited her GP to discuss her anti-epileptic medication. Following a discussion on the issues surrounding pregnancy and epilepsy, Joan decided on the advice of her GP to continue on her medication, and started taking 5 mg folic acid daily. Joan soon became pregnant with her first baby. She phoned the national pregnancy helpline, who put her in touch with her local midwifery service. Her midwife discussed her screening options and choices of care and place of birth. She discussed with Joan that in view of her epilepsy, she would benefit from the additional care offered by her local obstetric service. Joan saw her consultant obstetrician on several occasions during her pregnancy, who adjusted her medication as necessary. She continued to see her named midwife for her standard antenatal appointments. Her midwife facilitated her attendance at active birth classes. Joan and John considered a home birth, but after discussion with her named midwife, Joan chose to deliver at her local hospitals obstetric unit. Following a normal delivery, Joan breastfed her new baby on demand, encouraged and helped by the maternity support worker. She was given advice about safe and suitable settings for feeding and bathing her baby in view of her epilepsy, and how to access further help and support. Her medication was reviewed and she was encouraged to seek preconception advice again when she considered having another baby.

Models of Place of Birth - Key Principles

This section offers key principles for models of place of birth and should be read alongside and in addition to already published guidance (Maternity Matters, NICE Intrapartum Guidelines). Discussions regarding the most appropriate place of birth should be informed by the risk, needs, preferences and benefits assessment and decisions made in partnership with women and their families. Appendix 2 shows the London Review (2007) model for normal births outside hospital and potential volumes if the North West were to adopt the same model; note the change in emphasis of 50% of women choosing midwifery units or home birth following discussion with the London team. Home birth Women wishing to have a home birth will also have access to community and hospital services as required for antenatal and postnatal care Where there is an increase in home birth, the midwifery workforce must reflect these changes Transfer policies and procedures must be developed locally and be robust Obstetric, anaesthetic and specialist paediatric input are not available for a home birth, and women and babies requiring specialist support will be advised to transfer to an obstetric unit

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Manal is in labour with her first baby. She and Amir had enjoyed a normal pregnancy and planned to give birth in the local co-located maternity unit. When Manal went into labour she called her named midwife, Julie, who made a home visit. Manal was managing well in labour and Manal and Amir, after discussing with Julie, decided to stay at home for the birth. Manal gave birth to a healthy baby girl, and Julie and the maternity support worker, continued to give advice and support to Manal and her family for the following two weeks. The maternity support worker was able to give Manal extra help with breast feeding in the first few days.

Manals Story

Interpreters should be available for all women and their families who require the service (CEMACH 2003-2005, Safer Childbirth). Quality standards and audit All units should contribute to an annual regional perinatal report that is published and open to public scrutiny. Consideration should be given to the use of the Royal College of Obstetricians and Gynaecologists (RCOG) dashboard as a quality indicator. A regional early warning scoring system for all acute obstetric admissions including those in early pregnancy should be considered (CEMACH 2003-2005). The principles of the UNICEF Baby Friendly Initiative 10 Point Plan should be followed in all units. Research Underpinning the delivery of the core pathway is the recognition of the importance of evidence based practice. Important research questions can often only be addressed by large multicentre research projects. All professionals involved in maternity care should support audit and research and encourage women to participate.

Enablers

IT infrastructure and shared records Current IT and electronic records do not support the concept of care across organisational boundaries. In order for the core maternity pathway concept to work properly, there will be a need for electronic records, booking and images, which can be transferred across community and hospital information systems. Where specialist services are required, the electronic record is essential to ensure that appropriate advice and changes in medication are recorded and shared across all disciplines, particularly when services are accessed at a regional level or in an emergency. The hand held patient record is the first step towards this concept, but we need to take the next step to a fully integrated IT facilitated care record.

Implementation
The group recommends a five year implementation plan set in three stages: Stage 1: Commissioning shifts to local authority and community settings for antenatal and postnatal care. Introduction of an extended midwifery role and midwifery support workers Stage 2: Enablers to be in place including IT infrastructure, tariff and audit Stage 3: Full implementation of the core maternity pathway, including risk, needs, preferences and benefits assessment and care plans for all women and protocols to access specialist services

Tariff The payment by results (PBR) tariff to support this model of care, will need to truly follow the patient along the core maternity pathway, and reward community maternity care and normal birth (Maternity Matters). The tariff for more specialist care needs to be weighted to reflect the individual womans co-morbidities and level of service required. Commissioning Commissioning maternity services should include a requirement for services to be accredited in terms of safety and quality, in line with Safer Childbirth 2007, CNST and recognised outcome standards and audit. Commissioning partnerships between local authorities and health will need to be strengthened, to ensure the provision of maternity care in community settings, and shared roles to offer support services that span across education, social care, health, the independent sector and third sector. Medical training There is a need to move from trainee delivered to trained doctor delivered services. Trainees will still deliver some service, but training needs should be prioritised. Training will be delivered by consultants, other trained doctors and trained midwives. Workforce Development of the midwifery workforce to reflect the requirements of a more personalised approach to care is needed. This should include clear roles identified for advanced practitioners and maternity support workers who provide additional support for midwives and do not replace junior obstetric training. Midwifery training needs to cover a public health module, which would support a wider portfolio of support for more vulnerable women.
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Appendix 1
Glossary of Terms Core maternity pathway The core maternity pathway is a central pathway of care available for all women. The pathway is focused around risk, needs, preferences and benefits assessment at key points during pregnancy, where the woman and named midwife are able to consider together appropriate options for care and develop a personalised care plan. Women requiring significant and ongoing specialist input will still be encouraged to engage with their named midwife and community team as the pregnancy progresses. Figure 1 below shows the principle stages of the core maternity pathway. Figure 1

Core Maternity Pathway

Preconception Care

Positive Pregnancy Test

National telephone number directs women to local midwifery services.

First Assessment (Risk, needs, preferences, benefits) Specialist Obstetric Services Antenatal care (Choice of location) Regional Specialist Services

Pre-birth risk, needs, and birth preferences discussion

Birth (Choice of place of birth)

Postnatal care (Choice of location)

Role of the named midwife and the midwifery team This refers to a named, registered midwife who is responsible for providing most of a womans care throughout pregnancy and childbirth. When not available, as a member of a larger maternity team through effective communication and access, they will co-ordinate and share the care with other midwifery colleagues, specialists, disciplines and agencies. Role of midwifery support workers The role of maternity support workers/maternity care assistants is to enable midwives to focus on activities for which they are uniquely qualified. They would not replace midwives, but rather develop competencies to complement the work of midwives and other professionals in their clinical practice in all community and hospital settings and support mothers and their families in newborn care. They will need appropriate training and will be managed and supervised by midwives. Susan, Joan and Manals Stories These are demonstration stories that represent services women with different needs can expect when the core maternity pathway is in place.

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Appendix 2
Shows the London Review methodology for potential normal births outside hospital and potential volumes if the North West were to adopt the same model (note the changed emphasis of 50% of women choosing midwifery units or home birth following discussion with the London team).

LIKELY DEMAND FOR MIDWIFE SERVICES - LONDON REVIEW


Women, suitable for midwifery unit delivery 27 - 60% Require transfer to obstetric unit in labour 12 - 30%


Total 115,000 women delivering per year pan-London; rising to 125,000 by 2016/17 (baseline scenario)


33,000 74,000

23,000 65,000

11 - 32,000 women deliver in midwifery units or at home

Estimate of women who choose midwifery units or home

LIKELY DEMAND FOR MIDWIFE SERVICES NORTH WEST USING LONDON REVIEW METHODOLOGY
Suitable for midwifery unit delivery 27 - 60% Require transfer to obstetric unit in labour 12 - 30%

50%


Total 85,000 deliveries per year in the North West


23,000 51,000

16 - 45,000

8 - 22,500 deliveries in midwifery units or at home

50%
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Estimate of women who choose midwifery units or home

Appendix 3
Antenatal care: routine care for the healthy pregnant woman, NICE, October 2003 Antenatal and postnatal mental health: clinical management and service guidance, NICE, February 2007 Intrapartum care: management and delivery of care for women in labour, NICE, September 2007 Maternity Matters: Choice, access and continuity of care in a safe service, Department of Health, April 2007 National Service Framework for Children, Young People and Maternity Services, Department of Health publication, 2004 Our Health, Our Care, Our Say, Primary Care White Paper, Department of Health publication, 2006 Postnatal care: routine postnatal care of women and their babies, NICE, July 2006 Safer Childbirth, Minimum Standards for the Organisation and Delivery of Care in Labour, RCOG, RCM, RCA, RCPCH, 2007 Saving mothers lives, confidential enquiry into maternal and child health (CEMACH), 2003 - 2005 The baby friendly initiative, UNICEF The future role of the consultant, RCOG, December 2005 Why mothers die, confidential enquiry into maternal and child health (CEMACH), 2000 - 2002

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Appendix 4
Birth Group Members

NAME
Debbie Hickling (Chair) Catherine Boyle Leanne Bricker Janet Butterworth (SHA Facilitator) Denise Denoual John Eldred Julie Estcourt Fran Gosling-Thomas Melanie Hudson Sean Hughes Jan Hutchinson Mike Jackson Cally Nwosu Shamim Rose David Rowlands (Deputy Chair) Catharina Schram Cathy Trinick Pauline Tschobotko Wendy Turner Andy Watson

DESIGNATION
Clinical Director, Consultant Obstetrician and Gynaecologist Consultant Midwife Consultant in Fetal and Maternal Medicine Assistant Director (Choice) Team Leader for Childrens Services Health Visitor Consultant Obstetrician and Gynaecologist Head of Midwifery/Nursing Women and Childrens Division North West Government Office (Parenting) Divisional Nurse/Head of Midwifery Consultant Obstetrician and Gynaecologist Director of Public Health Paramedic, Assistant Clinical Director Consultant Obstetrician and Gynaecologist GP ( BMA), LMC Liverpool Consultant Obstetrician and Gynaecologist Consultant Obstetrician and Gynaecologist. Medical Director Head of Midwifery Head of Midwifery, Women & Child Division

ORGANISATION
University Hospital of South Manchester NHS Foundation Trust Southport & Ormskirk Hospitals NHS Trust Liverpool Womens Hospital NHS Foundation Trust NHS North West Bury PCT North Cumbria Hospitals NHS Trust Stockport NHS Foundation Trust North West Government Office North Cheshire Hospitals NHS Trust Lancashire Teaching Hospital NHS Foundation Trust Bolton PCT North West Ambulance Service St Helens and Knowsley Hospitals NHS Trust British Medical Association Wirral University Teaching Hospital NHS Foundation Trust East Lancashire Hospitals NHS Trust Pennine Acute Hospitals NHS Trust Blackpool, Fylde & Wyre Hospitals NHS Foundation Trust

Team Leader, Health Visiting with Specialist Role Heywood, Middleton and Rochdale PCT in Postnatal Depression Chairman of North Western Deanery, Obs and Gynae Specialist Training Committee, Consultant Obstetrician and Gynaecologist Lead Clinician for Perinatal Mental Health Services Tameside & Glossop Hospitals NHS Foundation Trust Manchester Mental Health and Social Care NHS Trust

Angelika Wieck

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our NHS

our future

Childrens Clinical Pathway Group


We believe that the needs of the family are inextricably linked to the development of healthy children
EXECUTIVE SUMMARY

The childrens1 clinical pathway group believes the health needs of children and young people in the North West are such, that we require a transformational change in both the quality of healthcare provided, and the wider measures taken to improve the health of children.
There is much in the region that we can be proud of; leading the way in a range of services and care pathways, and having a positive impact in improving health outcomes for children and young people. However this report also sets out some of the poor health outcomes in the region, and significant variations within the region. It is clear that urgent action needs to be taken if we are to arrest levels of health inequalities that begin before birth, increase in infancy and childhood, and persist into adult life. Despite record levels of investment in health, many of our most vulnerable, most disadvantaged children continue to have poor life chances and health. In order to help achieve the transformational change to improve outcomes , we believe that those responsible for commissioning and providing for health should commit to a North West vision of child and family health. Underpinning this vision will be delivery of the fair, accessible, personalised, effective and safe services we aspire to, and the promotion and protection of health and wellbeing. We also believe that the needs of the family are inextricably linked to the development of healthy children, and we therefore also need to consider the health and wellbeing of parents. Throughout this report where we refer to parents we include carers. The work of the other clinical pathway groups should therefore be intertwined with our work and vice versa. The group makes four broad recommendations, with a set of specific actions under each of these. We describe the outcomes we expect as a result of successful implementation of these actions. The rest of the report describes how we arrived at these recommendations, and our health needs assessment for the region.

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Introduction
Lord Darzi at the International Clinical Summit in London in October 2007 described the impetus behind the work of the clinical pathway groups as a movement and it is in that spirit that the members of this group have produced this report, listening to the voices of children and young people. We see it as a manifesto for transformation of child life and health in the North West. We believe these recommendations can make childrens health and healthcare more personalised, more advanced, increase the ethos of care and ensure we create the right care environment. These recommendations can, we believe, be used by commissioners, providers and communities to help transform the health of the children of the North West, improving outcomes as well as quality and safety of care. We believe we need leadership, innovation and engagement to achieve these aims. By leadership we mean constantly challenging the status quo and traditions and removing barriers to progress. By innovation we mean developing and using all our innovative talents, whether that is in our staff, our partners or our local communities. It also means accepting new technologies, breaking down barriers and innovating the way in which services are commissioned. By engagement we mean placing our children and young people at the heart of our decision-making. We are especially keen that young people are not just our focus but become the authoritative voice that speaks to us about their circumstances, their needs and the way they would like the us to commission and provide their services: Our health, Our say. We also mean engagement across the care delivery sector, for without this we do not believe we can get far enough upstream to health promotion and prevention. Sometimes the health needs of young people struggle to be adequately prioritised but some of the challenges facing children today in terms of lifestyle, public health and mental health mean that they will be adding to that burden much earlier in their adult life. Primary care commissioners later this year will be asked to draw up 10 year commissioning plans and visions, a real opportunity to begin this transformation. Key achievements we wish to see in the next 18 months are: An agreed programme for the networked, standardised provision of care for the acutely sickest children across our region supported by training, audit and underpinned by the latest communications and medical technology A targeted risk-based programme at local area level aimed at improving the life chances of the youngest of children under three years of age, focussing on enhancing breast feeding rates, improving parenting behaviour and early life nutrition, and using technologies. Build on the Sure Start programme, the family-nurse partnership, health visiting and schemes like Little Angels underpinned by continuous improvement methods and partnership working Implementation of a coherent commissioning framework at local level that demonstrably improves the health and healthcare of teenagers through targeted and riskbased assessment especially in relation to lookedafter children A clear pathway with an agreed key-worker for transition to adult care of every young person with a long term condition and especially in relation to mental health care needs
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For children receiving specialised care the development of benchmarked outcome standards used to drive service improvement and commissioning Below we set out our main recommendations, along with expected actions and outcomes:

Recommendation 1:
A public pledge to reduce health inequalities and to provide high quality healthcare to children and young people. Actions we call for: Regional and local organisations to agree to regional and local health priorities and to be held accountable for these, as part of a regional health strategy for children and young people Targeted support for those individuals and communities most at risk of poor health through public health and other initiatives Delivery of high quality healthcare and outcomes regardless of where a child or young person lives Commissioners and services work in ways that ensure children, young people and their families are at the centre of service design and provision, and that their voices are heard throughout Outcomes we expect: Annual reductions in rates of health inequalities across the North West, with particular improvements for those groups traditionally most disadvantaged Improved health outcomes for all children and young people, enabling them to achieve success in the other four Every Child Matters outcomes 2 Greater engagement of the public in the health and wellbeing of children and young people, through the pledge and through their engagement in service provision and design Improved signposting and support for families, children and young people to healthcare and to self-care services. Improved health outcomes for all children and young people

Recommendation 2:
All child health services and initiatives are commissioned jointly through local Childrens Trusts. Actions we call for: At a national level we ask that there is a statutory role for Childrens Trusts to be responsible for joint commissioning and health needs assessments by all key partner agencies At a local authority level, we call on all partners in Childrens Trusts to set timescales for the establishment of arrangements for the joint commissioning of all child health services; that consideration be given to how to retain existing, well-established networks for commissioning of specialist child health services Good practice models of integrated working across services to be built on, underpinned by strategic workforce planning and training The engagement of children and young people in the design, delivery and review of services and interventions

Outcomes we expect: More effective targeting of need through improved joint analysis of need and provision More seamless service provision for children and young people, particularly for those with complex needs Improved outcomes for children and young people, as their health needs are considered alongside other needs such as education and training, parenting support, play and leisure, and so on Significantly greater integrated service delivery and planning Improved health outcomes for all children and young people

given in Appendix 3. All have extensive experience in working with children and families and were encouraged to think outside the box. Members were either nominated by their organisation, or were approached by the SHA, to ensure a good representation across the sectors, disciplines, professional groups and the North West geography. In addition, we were fortunate to be able to call on a significant number of other individuals and organisations and have listed these in Appendix 4. In two separate events organised by the Regional Youth Work Team and Circles of Reconciliation, we also heard directly from young people about the health issues that most concern them. We expect that the multi-agency and multi-professional partnership approach we adopted in the review period will be mirrored in the implementation of its recommendations. Principles that governed our approach The group very quickly agreed that whilst we would retain the term clinical in our title, to be consistent with the regional and national programme, our approach would be an integrated, holistic one that placed the child at the centre. We believe that all children are entitled to: Be healthy, be safe, enjoy and achieve, make a positive contribution and achieve economic wellbeing which are the aspirations as set out in Every Child Matters; The best possible life chances, as described in the United Nations Convention on the Rights of the Child 3. These principles guided the work of the group as we undertook the review.

Recommendation 3:
Clinical leadership drives the development and delivery of high quality healthcare for children and young people. Actions we call for: All healthcare provided is evidence-based and consensually agreed as best practice Clinical leadership networks are developed and supported and work with joint commissioners to develop and maintain world class child health services in the region Care pathways based on the model set by the Royal College of Paediatrics and Child Health are used to guide commissioning and delivery, to ensure the provision of quality healthcare within a holistic pathway Outcomes we expect: Greater levels of clinical expertise across the region and across specialties Child health services in the North West are regarded as amongst the best in England Consistently high quality healthcare provided across the region Improved health outcomes for all children and young people

The Process
The group had four dedicated days set aside to help carry out the work. Led by the medical director from one of the regions childrens hospitals, a deputy chair from a local authority childrens service, and supported by the SHA, we also carried out work in between meetings, including consulting with our networks. Our next task was to determine the scope of our work. We decided that we would describe the scope by using six stories, which we developed to describe the health and wellbeing issues which confront many of our children and their families; these can be found in Appendix 1. Our stories are not intended to be all encompassing, but to highlight key issues for children and the way healthcare is provided. We think that we will be able to use the stories to engage young people and others in considering our recommendations, which will be the next stage of our work. For each journey we identified some key markers for what success would look like and we used the five Every Child Matters outcome areas to guide us. We also considered the elements of the pathways of care included in the journey from prevention, identification, treatment through to palliation described by the Royal College of Paediatrics and Child Health 4. We used this model because we felt it was very clear, can be applied against any disease, condition and issue that we considered, and takes a preventative approach as its starting point. We gave each of the children in our stories an identity and aspirations, which helped us as a group to stay focussed on the individual child and their family, rather than simply review services.

Recommendation 4:
Research and evidence based practice informs the shaping and delivery of healthcare services and interventions. Actions we call for: Research and the building of an evidence base for healthcare practice and interventions, are supported and developed at all levels Care networks contribute to and support research, and inform targeting of research programmes Research considers specialist care, targeted care and universal provision Outcomes we expect: Commissioning is better informed by regional and local evidence base Practice and service design is led by clinical best practice Improved health outcomes for all children and young people The core group The group consisted of a wide range of individuals representing different professional groups, geographical areas, and sectors; details of the membership of group are
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Within each of the stories we considered the evidence available to us, national, regional, local and where possible international. We also considered the information each of us gains each day working directly with children, young people and their families. Whilst some of this may be subjective, we have sought to back this up with hard data.

five year olds is three times greater in Blackburn with Darwen and Knowsley, compared with Crewe and Nantwich, and Congleton Ethnic and gender differences will also have variations in some areas Some of the key regional issues include:

Child Health in the North West


What do we know about the children of the North West? Well, there are a lot of them! In 2004 there were 1.72 million aged 0-19 years of age, with approximately 54 per cent of them aged 10 or older; these numbers are predicted to fall slightly to 1.69 million in 2007, although we know that in some parts of the region the numbers of children are increasing. Early indications suggest that this increase is partly prompted by the arrival of migrants from the EU. As we develop strategies to improve child health in the region, we will have to carefully consider the needs of these new groups, some of whom will be settling in areas that are not ethnically diverse. As well as receiving health services from a range of NHS organisations, children also access health related services from the voluntary sector, which is very active in support of children, young people and families across the North West. They provide a wide range of services as well as promoting the welfare and interests of children and young people at local, regional and national levels. We heard in the course of the review of concerns about the quality of the physical environment for some voluntary sector organisations. All non-acute palliative care in the North West is provided by the voluntary sector and resourcing for this is a source of concern. Two specialist childrens hospitals in Liverpool and Manchester ensure that virtually all healthcare can be delivered in the North West. Sub-regional networks in the region provide care and transport for newborn babies. Children are important users of health services. Within the under 18 population however, there are differences in who accesses services. For example, we know that children in lower socio-economic groups are nearly twice as likely to require emergency hospital admissions in the North West, compared with children in the more affluent families 5. About 25 per cent of all consultations in primary care are for children. We were asked specifically by Lord Darzi not to consider issues of reconfiguration - and we havent!

High rates of infant mortality The worst dental health at five years of age High rates of male long bone fractures for under 15 year olds High rates of sexually transmitted disease High rates of teenage conceptions amongst 15-17 year olds One of the highest annual rates for road injuries and deaths for the past three years, with more than 2,000 children aged under 16 injured and 148 under-19 year olds killed 6; The emergence of alcohol as a serious threat to the health of children 7 8 9 58 children and young people dying as a result of self-harm over the last 3 years 10. For certain groups of children, the prospect of poor health is heightened, for example, looked after children, disabled children, young people in the Youth Justice system, and children with complex needs. For many of these young people, the transition to adulthood can be a daunting one for them and their families, with the individualised care they were previously used to not always evident in adult care. Parents describe the prospect of transition, particularly for young people with complex health and learning problems, as scary and daunting. Considering our poor start in life, it is therefore not surprising that the North West has a shorter life expectancy compared with the England average. There are a wide range of factors which contribute to the poor health of children. In the North West some significant risk factors include: Poverty, which impacts on housing as well as household income; the data also tells us that children in lower socio-economic groups are significantly more likely to have a hospitalised emergency admission compared with those from more affluent groups; approximately 23 per cent of children live in households considered to be in poverty and in the North West almost 19 per cent of primary school age children are eligible for Free School Meals 11 High levels of obesity, compounded by low levels of exercise and poor diet Smoking amongst children and young people, expectant mothers and in the home Alcohol use and abuse by young people is amongst the highest in the country Lower breastfeeding rates Substance misuse drugs, alcohol and tobacco Low levels of vaccination against measles compared to EU rates High levels of low birth weight and prematurity which are known to have long term effects on health High prevalence of chronic conditions such as asthma Changing migration patterns in the North West. We know
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The Case for Change


Compared to other regions in England, the North West is a place where the health of many of our children and young people is poor. A detailed examination of the data by district highlights significant variation within the region. For example: Hospital admission rates for males aged under 18 for alcohol-specific conditions were highest for Copeland and Allerdale, and significantly greater than those for Manchester and Liverpool Frequent flier hospital admissions (four or more in one year) are more than 200 per cent greater for Pendle, Ellesmere Port and Neston and Bolton, than they are for Trafford and Fylde Infant mortality rates are 200 per cent greater in Pendle and Preston than they are in Rossendale, Trafford and Macclesfield The average number of decayed, missing or filled teeth for

that the health of the children of some ethnic groups is poor and that access to healthcare is limited by a range of factors. This includes language barriers that obstruct the delivery of effective, safe and personalised care. Increasing numbers of children and young people with long term conditions will demand both a strong public health approach, focussing on prevention and early identification, as well as the provision of services to meet complex needs. Self care will be an important aspect of care packages. There is growing evidence of a rise in poor mental health amongst children and young people, as well as amongst adults, many of whom of course are parents. The North West is currently the region with the highest use of adult mental health beds for 16 and 17 year olds accounting for 27 per cent of the national total 12. Work is underway to establish why this is the case, but early indications suggest insufficient provision in crisis services and specialist provision contributes to this. Specific groups of young people, including those with learning disabilities and in the Youth Justice system, can have higher levels of risk and lower levels of service provision 13. Equally, some areas report under representation of children and young people from black and minority ethnic communities. Amongst all these issues, parents play a central and critical part in a childs development, both physically and emotionally. Any work we do to support health and wellbeing amongst children must therefore consider what support parents may need, and indeed the health of parents themselves where this may compromise their parenting ability.

children. These children are typically seen by the same primary care team that looks after their parents and siblings. This creates a strong context for holistic family-based care, a platform on which more specialised services can build where necessary. It was proposed by the Court Report 14 in 1976 that the establishment of specialist paediatric general practitioners was a model that could deliver the vision that it outlined. There have been recent discussions that this model should be reconsidered (see for example Yorkshire and Humberside childrens pathway group report). Joint commissioning through Childrens Trusts Our second recommendation is that joint commissioning is the way all child health services and initiatives are commissioned, and that this is done through local Childrens Trusts. In the Northwest we feel that the current model of paediatricians and general practitioners, supported by their respective multidisciplinary teams has delivered effective care with good outcomes and, where these services work well in collaboration, world class care. However it is acknowledged that this is not the case everywhere. There is ample evidence of variations in how general practitioners manage their young patients. For example in the Liverpool PCT area, there is a four and a half fold variation in the number of new outpatient referrals from GP practices; there is also a six fold variation in attendances at the A&E department at the local childrens hospital. We feel that dealing with these variations is the key to improving health services for most children, and meeting the expectations outlined in Our Health, Our Care, Our Say. There is also a very clear link across to the wider agenda dealt with by local authorities through childrens services and Childrens Trusts, and the groups view is that joint commissioning would generate significant synergy and benefits in terms of outcomes. Our aim is to bring to the children of the North West the highest universal standards of primary care, working in collaboration with secondary care and other partners. Where we can deliver specialised care more locally, it makes sense to do so through the emerging multi-disciplinary teams that have improved healthcare over the last two decades. The Court Report recognised the need for integration of children's health services, advocating a child and family centred service in which skilled help is readily available and accessible; which is integrated in as much as it sees the child as a whole and as a continuously developing person. Much has changed, much has improved, but much needs to be done. We feel that this advocacy remains true more than 30 years later. We need to protect and strengthen the skills of clinical staff in specialist and non-specialist areas. At the same time, there needs to be a stronger understanding of the important contribution non-NHS services make to the health and wellbeing of children and young people. These give strong foundations for their adult lives, as well as providing environments where personal and social development is nurtured. It is our view that Childrens Trusts are well placed to drive this integrated, holistic approach. As importantly, we would expect there to be a greater and consistent engagement of children and young people in both the commissioning of services, as well as the direct provision where their views are taken into account.
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Our Main Recommendations


In this section of our report, we explore in more detail our four main recommendations. A public pledge to reduce health inequalities Our first recommendation is that there should be a public pledge to reduce health inequalities and to provide high quality health care to children and young people. Taking into account the above evidence, the group is firmly of the view that greater focus needs to be given to the deep-rooted health inequalities in the region. We call on all regional stakeholders to drive this forward, engaging local and sub-regional networks and ensuring that the voices of children, young people and their families are heard. The role of community health services for children and families is gradually changing across the country, building on good models of integrated working and targeted interventions, focussing on need and risks, as well as providing a core level of universal services. The roles of key staff, such as health visitors, allied health professionals, GPs and others are increasingly more multi-agency, working in a holistic system of prevention and early intervention. Engagement with parents, providing information and assistance so that they feel confident around their role in promoting health, is a key component of our approach. We are of the view that adults thinking about parenthood also need support and guidance especially, but not exclusively, around genetic counselling. Family general practice makes a huge contribution to the provision of health services to children in the UK. Around a quarter of all consultations in general practice are for

There are good integrated models in the region, including Sure Start and Childrens Centres, where local community engagement and participation have made a difference to individuals and local areas. Governance arrangements for general practitioners and for hospital paediatricians are well established, but for general practitioners with a special interest are still emerging. The time taken to train, accredit and cover the clinical governance aspects of the GPSI (GP with a specialist interest) workforce, have been much greater than expected. There are also issues with workforce planning and succession planning, given the small numbers of posts usually established. We feel that the application of standards, measurement of outcomes, performance review and feedback in relation to the delivery of childrens healthcare can be a strong method to achieve our aims. Clear definitions are required of the pathways to be commissioned and of the standards that underpin them both in primary and secondary. Such pathways will rely on appropriate collaborative and support agreements underpinned by clinical dialogues. Good examples to take this forward are NICE guidelines dealing with common problems like urinary tract infection, feverish illness in children and so forth. This approach can be described as a hub and spokes model, with expertise for a specific service delivered from one site, but with care reaching out to a number of different settings. This managed clinical network model allows patients to be treated closer to home. The number and type of spokes are dependent on the individual pathway and context. Other barriers to developing a significant cadre of specialist GPs include lack of evidence of improved cost-effectiveness, and the requirement for a new training infrastructure. In addition the number of GPs coming forward, has been limited as changes in the GP contract have seen them concentrate more on delivering their own practices objectives. Another potential downside is the pressure that could be put on access times if a patient is referred on to a consultant, if the case is beyond the experience of the GPSI. We think there is still great merit in the family doctor concept when it comes to dealing with children. The GP who knows the family can tailor his or her course of action in the light of their knowledge. A better approach might be to enhance the ability of GPs to deal with more cases themselves, or within a network of colleagues based in primary care rather than having to refer on. Quality driven by clinical leadership, research and evidence based practice Our third recommendation is that clinical leadership drives the development and delivery of high quality healthcare for children and young people. We call for measures to ensure that research and evidence based practice informs the shaping and delivery of healthcare services and interventions. Our fourth recommendation focuses on the need to build on best practice, and ensure that this is disseminated more effectively than at present, informing and commissioning. In terms of acute health care for children, the North West has significant improvement to make in raising standards of care. A recent survey by the Healthcare Commission showed that only two out of 22 Hospital Trusts were rated excellent 15.
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During the course of this review, we also heard a range of clinicians and NHS managers express concern that payment by results (PbR) may jeopardise effective care pathway implementation and design, because of perverse incentives. We would welcome efforts for this and tariff issues to be considered further. We would look for systems that reward provision in community settings and that reduce the need for acute interventions. For disabled children and children with learning disabilities, there is widespread evidence that healthcare is not always to a consistently high standard. There are variations in provision across areas. We heard as well of concern that transition to adult services can be daunting for many individuals and families and can be better managed. We include oral health care in this category. Overall in the UK, our children have poor outcomes compared to international standards for treatment in long term conditions such as diabetes, childhood cancer, Cystic Fibrosis, Duchenne Muscular Dystrophy, and Asthma. In relation to medicines, we know from speaking with professional staff that there are anecdotal safety concerns over prescribing and administration for children, and that there is a need to review off licence medicines. The National Patient Safety Agencys National Reporting and Learning System (NRLS) recorded 7,082 medication errors in paediatrics between 1st July 2006 and 30th June 2007, with over 99 per cent recorded in general and acute hospitals. Of those incidents reported to the NRLS the vast majority result in no or minimal harm (95 per cent) but around five per cent could have had significant consequences. Around 90 per cent of errors result from: problems in prescribing (23 per cent); administration and supply of a medicine from a clinical area (58 per cent); or preparation of medicines in all locations and dispensing in a pharmacy (11 per cent). Incorrect dosing accounted for over 30 per cent of errors, which is the single biggest factor and anecdotally reflecting the complexity of dose calculation in children, whose weight may vary by over 200-fold from smallest to largest. Interpretation of data from the NRLS should be undertaken with caution. As with any voluntary reporting system, the data is subject to bias. A proportion of incidents that occur are not reported, and those which are reported may be incomplete, having been reported immediately and before the patient outcome is known. We would also want to look more at how we can support self care, enabling children and families to take more responsibility and control over their medication. With increased training and support we should be able to improve care. As part of this work we would recommend that the North West childrens medicines network is asked to review and develop these issues. There are major shifts in how healthcare is accessed and provided in the UK: from primary care to secondary care; A&E departments; the increasing use of observation facilities and walk-in centres; and accessing multiple providers for the same illness. There is also a movement of patients towards the specialist childrens hospitals in Manchester and Liverpool from district general hospitals. Tragically we also know from experience the risks to the individual child when agencies fail to act in concert to meet health needs and safeguard children. The wider approach taken by Government to safeguarding is welcomed, but needs to be embedded in the NHS across all services that

come into contact with children. Leadership and professional competencies are essential in this complex and multi-agency environment; developing and supporting the integrated workforce is a critical element in meeting future needs. As at March 2007, there were 10,410 children in the care of a North West local authority, and 4,480 on a Child Protection register; this works out at approximately 30 per 10,000 population aged under 18 16. Drawing all of this together we strongly feel that care for children has to be based on partnerships and networks, and our recommendations reflect this. These partnerships and networks must straddle sectoral boundaries, embracing health, local government and the voluntary, community and independent sectors. Within and across organisations we have a strong sense that effective leadership will be a key enabler for success. Whilst we use the term clinical leadership to stress the importance of professional input and direction around certain conditions, we see this as operating within a holistic pathway that is not just about clinical solutions.

health inequalities and where healthcare is delivered, this is to a world class standard At a health service delivery level we would expect to see: Development of teams around the child with a lead professional to support personalised care and appropriate, effective and timely delivery of multi-agency care to children and families Integrated care pathway and standards, for children presenting with undifferentiated acute illness in community settings Integrated care pathways and standards for children presenting with critical illness and trauma, including transport provision Utilisation of technologies to improve care; for example, telemedicine links to provide timely assessment and to support network health professionals Safe and effective use of paediatric medicines, underpinned by electronic prescribing and competency levels for appropriate staff Support to families in terms of accommodation, communication, psychological support, social support and where necessary bereavement care Transitional care standards across all services, providing safe and age appropriate care to young people An appropriate blend of universal and targeted support and intervention for children and young people, across the range of public health issues, jointly commissioned with local authorities through Childrens Trusts

What Would Good Quality Care Look Like?


As a result of our deliberations and consideration of the evidence, we believe that the key features for a robust model of care for children and young people are: The model places the child at the centre and considers the needs of the childs family to support and nurture health and wellbeing The model takes a holistic and long term view of a childs needs, seeking to maximise the best possible opportunities for the individual, regardless of episodes of poor health and regardless of long term needs into adulthood The model promotes targeted prevention and equity of access; screening would be an important aspect of this work but would cover all ages There is a strong focus on prevention and early intervention, as well as empowering children and families to take responsibility for their own health and wellbeing Commissioning must be focussed on outcomes and undertaken in conjunction with all key partners. It will draw from an evidence base for the care provided, and the efficacy of care is constantly reviewed and improved. It will also take a more preventative approach, advocating social policy changes conducive to reduced disease-related exposure Clinical expertise is supported and developed across the pathways, including medicines management and public health Choice for children is a viable reality; care is provided close to home where this is in the interests of the child, but not at clinical risk All staff working with children can demonstrate an understanding of the specific needs of children including Safeguarding, and are supported to achieve world class standards of care The timing of transition to adult services is not solely dictated by age, but also by the maturity and individual needs of the young person; every young person has the right to become an adult in a way they feel is fair, personalised, effective and safe For the North West, the model overall seeks to reduce

At a network level we would expect to see: A role in feeding information back into the regional public health system to influence public health policy Minimum standards established for specialised commissioned services, to ensure equity of access and outcomes, as well as value for money Fully-engaged contingency planning for example for a pandemic flu

At a regional level we would expect to see: A clearly articulated and agreed vision for child health An agreement by regional agencies to support delivery of the vision, and a challenge to tackle an agreed set of regional child health priorities The championing of the health interests and needs of children, young people and their families in the North West

Implications for Delivery Models


We are of the view that improving the health of children and young people demands a holistic approach, and therefore our response should be a collective one with local government. Our recommendations should be seen as part of the joint commissioning roles of Childrens Trusts, with PCTs having a duty to ensure this happens. The SHA should take a strategic role in ensuring that effective networks are in place operating to the highest standards, for example the paediatric cardiology network, the paediatric intensive care network and the neonatal network. Whilst specialised commissioning functions must continue at a regional level, we expect these to be done with consideration of the holistic needs of the child as set out in this paper.

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In order to reduce health inequalities, We would expect the model to encourage PCTs and Childrens Trusts to develop intensive support for those families at risk of poor health outcomes, and support for those who provide it. These should be locally co-ordinated and family centred in time, place and approach. The model will demand commissioners and providers to look at delivering healthcare and health advice, in a range of settings where people want to go for example childrens centres, extended schools, shops, supermarkets, leisure facilities and so on. Modern approaches to pathway redesign should use worldclass improvement methodology such as Lean, and since the North West has several institutions at the leading edge of these methods, they could form the initial basis of an NHS Northwest internal consultancy. These inprovement methods will be as important as those based on technological innovation.

engaged in this commitment process, both from an investment perspective as well as being fully engaged in a shared agenda with local partners that increases life chances for children. The role of practice based commissioning needs further development, including expolring its potential impact on improving the health and wellbeing of parents. PCT LDP plans should be clear about resource commitments to child health services, so that providers are appropriately enabled to deliver those quality initiatives that cannot be incentivised through methods such as tariff. Commissioners are asked when developing Advancing Quality initiatives to incorporate these recommendations. They are asked to consider developing innovative and alternative ways to meet health care needs, including widening the provider market for example through personal health trainers for vulnerable children and families. Strengthened joint workforce planning with childrens services is essential, whilst at the same time ensuring that health professional roles are properly supported and developed. Workforce development should enable staff to work across boundaries and traditional sites. Finally, we are strongly of the view that too often there is not a strong enough voice for child health at local and regional levels. Across the sectors, leadership and a shared understanding of the profound implications poor health has in the long term on an individual are needed, to raise the bar so that in the North West we can break deep-rooted cycles of health inequality.

Implications for Enablers


The model of care will demand a high level of integration at the commissioning level, to meet the significant health issues confronting children and young people in the North West. It demands integrated or joint commissioning across those agencies charged with providing services and care for children. Children and young peoples plans, led by local partnerships, should form an important platform for setting out an areas intentions to improve the health and wellbeing of local children. It is critical that PCTs are genuinely

Priority Areas and Pathways


Using our stories, describing real life situations of children and young people, we identified six broad priority areas. The full stories are set out in Appendix 1, but below we set out a summary of what we identified as the main enablers, blockers and outcomes, and what the actions should be. The group was also of the view that we should give one realistic action for each priority area, by way of an indication of what could begin to be done locally to improve outcomes. The priority areas are as follows: Priority Area: Unplanned care for acute illness, including minor illness and minor trauma. See Tylers story Actions Development of an integrated care pathway across primary and secondary sectors Enablers Blockers Outcomes More local care Improved self care Reduction in A&E attendances and in short stays in hospital The development of skills The tariff is a disincentive and knowledge to support foracute trusts specialist care in primary A lack of clear agreed settings universal standards and The adoption of technology, protocols for community such as Telemedicine and settings IT for radiology and The ability to access pathology services, particularly out of hours

1st action: Mandatory training framework for anyone seeing acutely ill children to cover three areas: recognition of the sick child (as Spotting sick child DVD); Child Protection level 1 and communication.

Priority Area: Unplanned care for critical illness medical, surgical & trauma care. See Xiangs story Actions Development of an integrated care pathway and network across secondary tertiary sectors Enablers Blockers Outcomes All units meet the Healthcare Commission excellent standard Fewer deaths and serious untoward Incidents PICU/HDU transport system Transport times for A support network, for remote locations example anaesthetics, Finance, workforce and and cardiology governance issues Improved bereavement care compromise delivery

1st action: Identify a network lead for each spoke, who should oversee audit and critical-peer reviews; and training in spoke unit; and accept some responsibility for critical care in the spoke unit.

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Priority Area: Medicines management. See Tylers story Actions Develop electronic support for competent prescribing and administration Enablers Competency-based training at undergraduate and postgraduate level Blockers Lack of electronic solutions Delays in Connecting for Health and costs Trusts have different systems Outcomes Reduction in medication errors in children Fewer deaths and complications

1st action: The North West medicines network to be asked to develop education in training and competence standards for the workforce, from undergraduate through postgraduate, and to work with sub-regional networks to develop implementation strategy.

Priority Area: Transition to adulthood. See Davids story Actions Enablers Blockers Outcomes Develop transitional care Childrens Trusts to be standards across all responsible for this aspect services, providing safe and of care, with connections to age appropriate care adult care All vulnerable children with complex needs have a SMART transition plan Individualised Budgets Transition planning using person centred approaches and enabling young persons meaningful involvement Better joint working between child and adult services planned handovers The NHS differentiates at Effective transition for all 16 and 18 young people; they Reluctance of some adult participate with their teams to take on 16 or 17 families from an early stage year olds Reduction of risk to an Parents concerns at individuals health and transfer to adult services wellbeing and optimisation Lack of adult clinicians and of life chances expertise in some areas for example attention deficit and hyperactivity disorder (ADHD) The voice of the young person is not heard

1st action: Introduce transition guidelines for all health and social care provision; it should be a requirement that these are included in inspection assessments. Priority Area: Early years targeted support to parents. See Jasons story Actions A multi-agency team around the child with a key worker Choice for parents and child on integrated care options (HV/Nurse-family partner/ midwife) plus CAMHS/ adult mental health Improved breast feeding rates, sustained to three months Enablers Childrens Trusts to be responsible for this aspect of care, with connections to adult care Greater NHS staff involvement in Childrens Centres/SureStart and extended schools The Child Health Promotion Programme Voluntary and third Sector Programmes like Little Angelsfor breast feeding Blockers Lack of priority for health promotion and prevention Hospital-based clinicians focussed on tariff-based work Lack of CAMHS resources and adult mental health skills resources Outcomes Less medicated solutions, greater involvement of parents through training and education Improved immunisation, dental health, pregnancy intervals and reduction in road traffic accidents and exposure to cigarette smoke

1st action: All agencies to base assessments and meetings on CAF and/or ECM outcomes. This includes GPs and should be used as a marker of good practice.

Priority Area: Later years targeted support to vulnerable young people. See Chelseys story Actions Empowerment and resilience through targeted advocacy, support & informed choice Enablers Childrens Trust to be responsible for this aspect of care, with connections to adult care Tackling risk taking behaviours in an integrated way Intensive holistic corporate parenting School health workforce Blockers Outcomes Need for skilled key workers Reduced incidence of poor CAMHS resources mental health resulting in Lack of drop in facilities suicide and self harm Greater self confidence Improved life outcomes for vulnerable groups

1st action: Introduction of Team Around the Child systems and techniques.

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Appendix 1
Our Stories The group created six stories to describe the health and wellbeing issues that confront many of our children and their families. We gave each of the children in our stories an identity and aspirations, which helped us as a group to stay focussed on the individual child and their family, rather than simply review services. They are not intended to be all encompassing, but to highlight key issues for children and the way health care is provided. We think that we will be able to use the stories to engage young people and others in considering our recommendations, which will be the next stage of our work. With all these stories, we considered the links to the five Every Child Mattes outcomes and the priorities for action. Journey 1 Tyler Tyler has had no immunisations as his parents believe they will harm him Tyler a 2 year old boy develops a high temperature. His parents care for him for 12 hours, then call NHS Direct who advise that he is seen in primary care He is then seen in primary care and returns home with reassurance and paracetamol He develops worsening symptoms and returns to primary care as instructed He now has an evolving purple rash He is referred urgently to a District General Hospital by ambulance He is resuscitated & stabilised in the accident and emergency department and then taken to a high dependency bed He is transferred to regional intensive care unit (PICU) after a wait of 12 hours He is on a ventilator and has 6 different drugs being given by intravenous infusions He deteriorates and dies His family wish to access bereavement care His death is reported to the local safeguarding board

Journey 2 David David is a 17 year old boy and has a girlfriend Miranda a fellow pupil at his special school. He only sees her at school. His parents are in their 60s and not in good health. David wishes to be increasingly independent. David uses and loves his mobile phone and facebook He has complex health problems following preterm birth: Mobility and recent fracture due to osteoporosis Learning difficulties Epilepsy Gastrostomy Currently he is under the care of a paediatrician, with whom he has regular appointments orthopaedic surgeon, community paediatrician, nurse specialist, GP and occasionally reviewed by a paediatric neurologist; though he is fed up of going to clinic and being in the queue with babies He is on six different daily medications Journey 3 Chelsey Chelsey is a 12 year old girl in the care of local authority (fostering) who asks to see the school nurse as she has had unprotected sex She was sexually active with a 13 year old boy. Recently she had sex twice with a 20 year old man who plied her with drink She feels different from other children for example she had periods at 9 years She has had two self-harm episodes requiring admission to hospital, one during which she was intoxicated with ethanol She smokes, is overweight and has very low self-esteem Her school attendance is poor Journey 4 Jason Jason is a 4 year old boy born small-for-dates; not breast fed. His mother is 21, single and has two younger children. She smokes She has a recent new partner her third She gets some help from Jasons paternal grandmother He is a poor sleeper, relentlessly active and has challenging behaviour. Hes always tripping over and getting bruises and also has flat feet. His language skills are poor as are his social skills He missed his preschool booster immunisation Although he has a place at nursery he is a persistent non-attender He is ravenous when he gets to nursery He is often left in the care of a 13 year old boy who is often seen in the neighbourhood unsupervised late at night

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Journey 5 - Jacob An 18-month-old boy is diagnosed with a hernia by his GP, which will need surgery. His parents decide to use Choose and Book He lives in Cockermouth on the Cumbrian Coast The choices are a local district general hospital, a specialist childrens hospital or an independent sector hospital

Journey 6 - Xiang A recently arrived Chinese family are involved in a road traffic accident when a car runs into the mother who dashes into the street in Kendal, Cumbria after her 4 year old son Xiang She has a broken leg and is concussed The boy is seriously injured with head, trunk and limb injuries and paramedics are at the scene The father and 8-year old girl are bystanders. They speak almost no English The nearest major trauma centres are in Liverpool and Manchester

Appendix 2
References
1

Child/young person - term used interchangeably in this report, indicating a person under 18 years of age unless otherwise stated. Department for Children, Schools and Families, Every Child Matters - Change for Children, 2004, www.everychildmatters.gov.uk UNICEF, www.unicef.org/crc/index_understanding.html Royal College of Paediatrics and Child Health, A guide to understanding pathways and implementing networks, December 2006. www.rcpch.ac.uk Regional Public Health Team, Tom Hennell, Childhood Injuries - Children under 15 (Internal Paper to NW Children, Young People and Maternal Health Board), November 2007 Regional Public Health Team, Tom Hennell, Internal Report, 2007 British Medical Association, Fetal Alcohol Spectrum Disorders - A Guide for Healthcare Professionals, 2007 www.bma.org.uk Association of Public Health Observatories, Indications of Public Health in the English Regions, 2007 www.apho.org.uk

Trading Standards North West, Alcohol Survey of Young People June 2007 Regional Public Health Team, Tom Hennell, Internal Report, 2007 GONW, Internal Paper, 2007 LDP Returns, Quarter 1 2007, 1,063 of the 3,954 hospital occupied bed days on adult psychiatric wards of patients aged 16 or 17 under the care of a psychiatric specialist. Healthcare Commission, A Review of Healthcare in the Community for Young People Who Offend, 2007 Fit for the future: report on the Committee on Child Health Services, HMSO 1976 Healthcare Commission, Improvement review into services for children in hospital, 2007 www.healthcarecommission.org.uk/ serviceproviderinformation/reviewsandstudies/ servicereviews/improvementreviewmethodology/ servicesforchildreninhospital.cfm GONW, Internal Paper, 2007

10 2

11

12

13

14 5

15

16

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Appendix 3
Membership of the Clinical Pathway Group

Name
Dr Steve Ryan (Chair) Dr Peter Powell

Job Title
Medical Director Consultant Paediatrician & Associate Medical Director Womens Children's & Outpatients Division Consultant Paediatrician Safeguarding Children Lead Childrens Unscheduled Care Nurse Consultant Executive Director of Nursing Clinical Medical Director; Commissioner Consultant Paediatrician Associate Director; Childrens Services Advisor Clinical Safety Co-ordinator & Trusts Child Protection Officer Consultant Paediatric Surgeon Public Health Specialist Assistant Director Professional SALT Lead Assistant Director, Workforce Registered Manager Team Leader for School Health Nurse Consultant

Organisation
Royal Liverpool Childrens NHS Trust Bolton Hospitals NHS Trust

Dr Kate Goldberg Bridget Welch Julie Flaherty Mrs Moya Sutton Dr Alyson Jones Dave Sweeney Deb Lee Eustace de Sousa Helen Lambert James Bruce John Doyle Lorraine Butcher (Deputy Chair) Michelle Morris Mike Burgess Pat Marsh Elaine Heague Gemma Trainor

Blackpool, Fylde & Wyre Hospitals NHS Foundation Trust Lancashire Care NHS Trust Salford Royal NHS Foundation Trust Blackpool, Fylde & Wyre Hospitals NHS Foundation Trust SAFE Centre, Lancashire Teaching Hospital Halton and St Helens PCT North Cumbria Hospitals NHS Trust NHS North West, GONW North West Ambulance Service NHS Trust Central Manchester and Manchester Childrens University Hospitals NHS Trust Liverpool PCT Halton Borough Council Salford PCT NHS NW Together Trust Sefton PCT Greater Manchester West Mental Health NHS Foundation Trust

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Appendix 4
Individuals and organisations that commented on the draft report included:

Name
Cynthia Fletcher Sue Kirk Moira Swann (chair) Dominic Harrison Brian Boyle Tim McDougall Andrew Rowland Pat Crawford Christina Kennedy Barbara Nicholls Maureen Banner Dr Dympna Edwards Helen Fessey Mark Platt Dr David Isherwood Sian Snelling Martin Farrier Philippa Hunter-Jones Janet Cobb

Job Title
Regional Change Agent Director of Childrens Services Deputy Director Childrens Services Advisor Nurse Consultant SpR Finance consultant Childrens Centre Manager Ward Councillor Deputy Director of Public Health Administrative Worker Consultant Paediatric Psychiatrist Consultant Clinical Biochemist Consultant Community Paediatrician Consultant Paediatrician and Clinical Director Child Health Lecturer Director of Public Health

Organisation
NW CSIP Manchester University Cumbria County Council, on behalf of NW Association of Directors of Childrens Services Regional Public Health Team Government Office for the NW Pine Lodge Young Peoples Centre Royal Liverpool Childrens NHS Trust and representative of BMA Royal Liverpool Childrens NHS Trust Knowsley Rixton & Woolston Halton & St Helens Primary Care Trust Liverpool Mental Health Consortium Royal Liverpool Childrens NHS Trust Royal Liverpool Childrens NHS Trust Royal Liverpool Childrens NHS Trust Wigan University of Liverpool Management School Jan-net Ltd Halton BC On behalf of regional AHP network Reflect and Change Oldham Borough Council Working Together (Primary Care CAMHS) Liverpool GONW North Lancashire PCT UCLAN NHS Direct, North West Region NPSA Cheshire and Merseyside Child Health Development Programme

Michelle Morris Jackie O'Carroll Jill Beaumont Jane Marshall John Hussey Sue Kardahji Dr Jim Gardner Professor Soo Downe Tricia Hamilton Susan Bothwell Jonathan Smith

Consultant Speech and Language Therapist Service Director Supporting & Extending Learning Consultant Clinical Psychologist Service Lead GP Infant Feeding Coordinator GP Regional Director of Nursing Patient Safety Manager Chief Executive

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our NHS

our future

Staying Healthy Clinical Pathway Group


Health inequalities is one of the most serious challenges facing the region and as such is identified as a key area for action
Main Themes and Priorities

Because the NHS continues to focus on sickness rather than preserving good health, much needs to be done to change its culture and its mindset if the North West is to achieve the really big improvements in health we need. The staying healthy group recommends a 2% per annum shift in NHS resources away from fire-fighting towards preventive measures, with an additional shift of 0.5 % for spearhead PCTs, to improve peoples health.
Evidence based health improvement and preventive services should include, as well as screening, effective multi-agency interventions to improve health and health determinants such as: Falls prevention Reducing seasonal deaths Healthy schools programmes Tobacco control to reduce exposure of children in the home to cigarette smoke, action on child poverty Reviewing licensing of alcohol premises Banning vending machines with junk food from colleges and workplaces Health inequalities is one of the most serious challenges facing the region and is a key area for action by the North West Regional Public Health Group, NHS North West, and Government Office North West. People in the North West have some of the poorest health in the country. More men and women die from cancer and coronary heart disease than anywhere else in England; we have the highest rates of alcohol-related hospital admissions; and the highest rate of admissions for schizophrenia and depression. Improvements in lifeexpectancy in the past five years have not been big enough to close the gap between ourselves and other parts of the country. There is also a danger that obesity and excessive drinking could undo the progress that has been made. The region suffers widespread inequalities and needs both short and long-term strategies for health improvement: short-term solutions for health improvement are primarily within the remit of the NHS and NHS North West is responding to this need and leading the work; long-term solutions for health improvement require broader partnership engagement.

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The State of Health in the North West


People in the North West face some considerable challenges to their health and wellbeing: The North West is the seventh worst region for low income 16% of people on benefits Over a quarter of children live in poverty 23% of adults are binge drinkers More than six out of 10 adults are overweight or obese Only 11% of adults are physically active We have the highest level of drug misuse in England We have the highest level of long term mental health problems in England

Life Expectancy Gap: Local Authorities in the North West, and England
Trend 1995-97 to 2004-06, comparing the North West average with the spearhead group

Percentage of national life expectancy at birth

three-year pooled figures

Manchester and Blackpool have the lowest average male life expectancy in England - at 73 years, a substantial 10 years less than the English local authority with the highest male life expectancy (Kensington and Chelsea at 83 years). Life expectancy for women shows a similar pattern. Liverpool has the lowest female life expectancy - at 78 years, nine years fewer than the England best of 87 years. In the North West there are 3,500 excess annual deaths in under 75 year olds, from causes that are treatable and/or preventable. Almost 2,000 are due to cardiovascular (CVD) diseases and cancer; over 500 are due to respiratory conditions; almost 500 are due to digestive diseases including cirrhosis; and almost 250 as a result of accidents and external causes. Other areas of concern include: Sexual health: we perform poorly on the target to give access to services within 48 hours, particularly for the under 25s and 40-50 age groups Obesity: childhood obesity mirrors national trends and adult obesity is likely to have a high impact on diabetes and renal services
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Alcohol: trends in North West are rising at a faster rate than the national trend with concomitant increase in liver disease and intestinal diseases Lung cancer: this is the most common cause of cancer death across the North West, even though health economies are making significant progress in smoking cessation and tobacco control. Lung cancer is almost wholly preventable CVD: this is the most common cause of death. There is variable performance in managing high risk patients. Maximum effort with this group would achieve the 2010 life expectancy target Under-18s conceptions: linked to sexual health and alcohol agendas Flu Pandemic: this is overdue and could occur within next two years. At least 50,000 deaths are expected across UK and it will hit in two waves over a three to four month period

Regional Indicators of Performance: Alcohol


Alcohol-related death rates, with 95% confidence limits1, 2001-2003 (pooled)
Rate per 1,000 population

ENGLAND

North East

North West

Yorkshire & the Humber

East Midlands

West Midlands

East of England

London

South East

South West

Health inequalities Achieving a reduction of health inequalities in the North West depends on delivery of short (by 2010) and medium to long term (beyond 2010) strategies for health improvement. In turn these should be underpinned by effective interventions, health policies and healthcare services which ensure that the people of the North West can stay healthy, and that are supported by robust intelligence and performance improvement systems. The short term focus or the now solutions for achieving a measurable improvement in life expectancy by 2010, will require systematic action with interventions that are known to be effective. This means action to prevent premature death for people who already have cardiovascular disease and cancer or are at high risk of these diseases. For the medium to long term, action on the wider factors which affect health are needed. This includes housing, employment, education, and transport and requires an integrated strategy from government departments, local authorities, the NHS and other key regional partners such as the Regional Development Agency. This will mean tackling lifestyle factors linked to obesity in adults and children, type II diabetes and alcohol consumption. The group has reviewed the current public health issues and challenges facing the North West, and the role of the NHS in its own work and in partnership with others in addressing these issues. Establishing where we want to be: There are two major cross-cutting themes in the staying healthy group: The NHS as a corporate citizen and a corporate employer Creating consumer demand for health

Use of tools and techniques to help us achieve our desired outcomes Alcohol is the health time bomb Positively influence pregnancy; it sets you up for life Think about the contribution of different determinants of health, not just lifestyles Building health resilience; make real and sustained changes to a communitys ability to stay healthy through the use of social marketing Influence the future direction of NHS - shift resources to prevention Create public anger at health inequalities and create a desire for change Create coalitions for staying healthy Break the cycle of preventable repeated ill-health Bridge the culture gap between partners in staying healthy Keep solutions simple and deliverable Learn from the commercial sector about getting the message across Emerging themes Managing health and health seeking behaviour Reducing health inequalities Ensuring the wider health agenda is covered Staying healthy before you hit the clinical pathway Health literacy and resilience Communications and the role of the media in helping to make health infectious The staying healthy group needs to influence and challenge other clinical pathways groups outputs The NHS should be seen as only a part, whilst a significant one of the solution to improving health. The health service needs to engage with other players such as local authorities, third sector and the private sector, which can all have an impact on improving health. It is therefore crucial to engage these partners as well as the people of the North

The groups desired position includes the following: Use those professionals who deal with the well Disseminate learning into our individual organisations Maintenance of whole health includes mental health and wellbeing
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West at an early stage. The table below gives details of some of our stakeholders: Examples of partners in staying healthy Service users Other clinical pathways Homeless/asylum seekers Social housing associations Ambulance Disabled people Business Portman Group Social clubs/groups Parents Social care professionals Public Fire Service Teachers Schools/colleges/universities Private sector - industry Police Public health development service Children Someone with an interest in the area/field Amateur/professional sports teams Voluntary sector Pubs and clubs Community pharmacy

Drivers and Barriers


The barriers to tackling health inequalities can be dealt with if there is political will and if there is a coalition to create consumer demand for health. Public health intelligence can help deal with public anxiety about the nanny state, while awareness of the economic impact of health risks can be a driver for change. The table below illustrates the main barriers to improving health and the corresponding drivers: BARRIERS Performance management Leadership Practice based commissioning DRIVERS Policy: - Commissioning - Joint strategic needs assessment - Local area agreements NHS communications Professional attitudes Realisation of central and local governments role in protecting and promoting the publics health Quality of partnership Community demand The way things are Economic impact of health risks Leadership and development Shift from second to first care world class commissioning Workforce planning New ways of working

Resources - funding stream Resistance to change Public anxiety - fear of nanny state

Media Political will Public health intelligence

Adverse reactions to public health message Cost to treasury Messages too general need to personalize Inconsistent media reporting of scientific research - magnify the trivia Need for long-term thinking Difficult to lead by example workforce unhealthy

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Key challenges: The group identified some of the main challenges: Changing the culture and mindsets of staff from the inside out by training and development Changing the NHS from a sickness to a health and wellbeing service All staff to use consistent messages at every opportunity - training and values Systematic delivery of health improvement and preventive services on an industrial scale Job descriptions including health improvement activity Public cynicism A proactive marketing strategy for health and wellbeing through collaboration across public, private and third sector agencies, which includes better use of real life stories The group commissioned a piece of work to review public attitudes towards health and healthcare in the North West from 2005 to the present day, which has influenced the thinking behind this report. In all, 20 separate studies were analysed for common themes and key messages. The studies show a gap in understanding why people who know they should eat healthily and take part in exercise do not do so; a lack of understanding about what action the population wants government, NHS, local authorities and partner organisations to take, to support them in making healthier choices, without being considered a nanny state. Only 11% believe their lifestyle choices affect their own health, whilst 42% felt major diseases had more effect. This highlights a considerable knowledge gap in the populations understanding of how everyday choices impact on their own health and contribute substantially to ill health. As Wanless highlights, for the population to improve their health they need to understand what being healthy could mean for them. It is clear that some different approaches are needed to tackling the health problems that people in our region face. Since children are the future, we need to ensure they can make informed choices about diet and physical activity and are encouraged to live healthy lives. However, any approaches should include parents too, since they have identified that they need support and information themselves, to achieve healthier lives for their children. People know that diet has a major influence on their health, but barriers such as cost and time reduce their ability to make healthier choices. They would like to see more convenient services available that would support good health, other than the traditional ones available from their GP. We need to consider the range of potential interventions that might lead to public health improvements and fully understand the feasibility, the cost of change to various stakeholders, the likely impact if change is achieved, and how far away from our targets we are on a particular issue.

Our Approach: The Lifecycle Framework


The group has developed a staying healthy lifecycle framework (attached Appendix 1) based on St Leger and Pickenss Framework for Health Needs Assessment, to identify where staying healthy intervention programmes can have a key influence at different stages in life. It also links to the work of other clinical pathway groups. There are some common themes such as childhood immunisation and other vaccination programmes, improved medicines management, chronic disease management, weight management, crime prevention programmes and support for victims of crime and anti-bullying, homelessness. This approach is underpinned by the themes of physical and mental wellbeing, sustainability, respect and dignity. The NHS needs to develop joint initiatives and engage with other players to improve public health, the regional economy, social cohesion and the environment. There will need to be strong partnerships with the local councils, the voluntary sector, the private sector and other regional agencies, such as the ambulance and fire services to achieve these goals. The partnership with citizens will be crucial, they will play an important role in shaping and managing the direction of travel. Strategic links are needed with regional and national priorities such as: Commissioning for Health and Wellbeing Health Challenge England Our Life Our Health Our Care Our Say Transforming Social Care The North West Framework to Achieve Healthy Weight for Children and Families The North West Food and Health Action Plan The sustainable development and corporate and social responsibility agendas The emerging health programmes of city region developments Local, multi and comprehensive area agreements

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Our Recommendations
Set out below are key messages from the lifecycle framework for the NHS as a whole, and national and regional recommendations, which would support the culture change needed for the NHS to become a staying healthy service. National recommendations from the North West Reform the system Plurality of provision - development of new prevention services and public health outcomes built into national contracts on the basis of world class commissioning Develop contestability in the delivery of health improvement services Review and reform the NHS tendering process to allow new market entrant, especially third sector and social entrepreneurs, to compete for contracts as service providers Develop all health, wellbeing and social care partners into public health and health improving organisations focussed on reducing health inequalities Acute, specialist and care trusts to join the health promoting hospitals network Harnessing resources There should be a national review of the Quality and Outcomes Framework, which should incentivise the delivery of the health and wellbeing agenda. Over time, QOF should move to become an evidencedbased public health, focussed system. At the moment the QOF indicator for regular review of high risk CVD patients is not consistent with NICE or NSF guidance Use programme budgeting, to determine, promote and monitor a substantial and sustained shift in mainstream NHS resources from treatment to prevention to deliver improved health outcomes (suggested 2% per annum with an additional 0.5% for spearheads) and reduce health inequalities Develop national tariffs for health improvement activity as part of payment by results as an incentive. International Classification of Disease 10 codes exist (work undertaken by European Union, Health Promoting Hospitals network and World Health Organisation Europe) to enable a tariff to be set for health improvement activity such as brief intervention for alcohol or smoking cessation Commission health improvement activity as part of service level agreements with all providers and establish performance standards within a quality framework Commissioning for health and wellbeing framework should be incorporated formally into the National Operating Framework and local area agreement guidance with focus on improving health equity Review the use of taxation as a tool for influencing personal staying healthy behaviour Develop the workforce Specific health improvement and public health training, skills and practice built into the Knowledge Skills Framework and into all NHS job descriptions nationally
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The electronic staff record, needs to be adapted to reflect public health and health improvement skills and competence Develop and implement national public health training programmes, qualifications and accreditation for frontline staff Develop and implement a national public health leadership programme for leaders in different sectors, for example, scrutiny committee councillors, chief executives, executive and non-executive directors and chief officers Health improvement and public health training skills and practice should be built into the performance improvement and staff development frameworks of local authority, other public sector and third sector staff Workforce leads and regional directors of public health in Government Office and Strategic Health Authority roles in each region, to agree training programmes to deliver basic qualification through service level agreement with appropriate providers and partners Public Health Teaching Networks to introduce public health and health inequalities themes into other continuing professional development programmes, by scoping the formal CPD programmes operating in each region in partnership with post-graduate deans and other key agencies Public health networks to ensure NHS organisations and other partners in each region contribute to the workforce commissioning process Review ooccupational health services and develop consistent national standards which support health seeking behaviour and return to work The NHS should lead by example by having a healthy workforce and, therefore should ensure that staff have preferential access to an effective, world class occupational health service which supports health promoting lifestyles and return to work Improve performance National performance improvement frameworks and targets should measure achievement of health improvement outcomes and reduction in health inequalities Regulators such as Healthcare Commission, Monitor, Care Standards Agency and the Audit Commission to ensure that frameworks such as the annual healthcheck and the comprehensive area assessments assess health and social care organisations joint capacity and capability to deliver health improvement outcomes and reduce health inequalities Creating the environment The recommendations above need to take place within the context of a sustainable environment. The NHS needs to be committed to developing joint initiatives to improve public health, the national and regional economy, social cohesion and the environment and engage with other players We should ensure that NHS premises become health promoting environments using tools such as health imapct assessment, sustainability appraisals and benefits realisation. Work is underway in the North

West to align health impact assessment and benefit realisation methods, working with community health partnerships The NHS and local authorities should ensure that all significant new infrastructure developments should be informed by and reflect the need to improve health and well-being and reduce health inequalities using health impact assessment as part of the formal assessment and planning process Regional recommendations for the North West The NHS and other key partner agencies in the North West should be an early adopter of the lifecycle framework: Ensure that staying healthy recommendations are incorporated into all other clinical pathways programmes using the lifecycle framework to inform this Government Office North West and NHS North West should ensure that commissioning intentions in standard operating frameworks, staying healthy agenda and lifecycle framework NHS North West and CSIP should ensure that all relevant partners are engaged in workforce development to deliver health improvement and reduce health inequalities NHS North West and other key partners should ensure that all social marketing programmes in the North West are aligned to and consistent with the staying healthy recommendations Ensure that the Our Life programme delivery is aligned to and consistent with the principles set out in creating consumer demand for health and that this programme is formally evaluated North West Development Agency to review and support the delivery of increased workforce capacity and capability, to deliver staying healthy agenda through its joint work with the NHS on sustainable public sector procurement and the good corporate citizen group The NHS has a corporate and social responsibility to improve recruitment opportunities for local disadvantaged and long-term unemployed people. Worklessness is one of the key contributors to poor physical and mental health. Partners need to jointly plan education and training for staff; to develop recruitment strategies to maximise joint working; and to focus on developing the potential of the local population We recommend that the staying healthy lifecycle framework is supported by a robust, user-friendly intelligence system, with data collection linked to the Advancing Quality programme for: Health improvement activity and outcomes Providing patient-centred information to facilitate their treatment and ongoing self-care Supporting health and social care workers in giving appropriate advice and care

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Appendix 1

A Staying Healthy Lifecycle Framework


NHS messages: NHS as a corporate citizen and a corporate employer should:
Improving recruitment opportunities for local, disadvantaged and long-term unemployed people, as well as other marginalised groups. Collect sophisticated data on retention and recruitment and set and report on agreed targets Invest in the training and development of the future professional workforce, and in health improvement aspects of employment. The NHS will continuously build on the Improving Working Lives standard Maximise the impact of recruitment and retention on the health of the local community. The NHS will work in partnership with other regional and local agencies, to plan skills development and recruitment strategies to maximise joint working and develop the potential of the local population Monitor the work environment and will demonstrate continuous health improvement of staff. Staff will be involved in developing a healthy workplace and initiatives to support healthy lifestyles Make healthy sustainable food options available to staff and visitors for example access to fresh fruit and vegetables, organic food, reduced salt and fat; and support healthy lifestyles such as exercise, support for stopping smoking, drinking water Help staff access childcare and offer the opportunity to purchase childcare vouchers. Staff, who are carers offered flexible working to suit their needs. Progress will be monitored through staff satisfaction surveys on whether staff who are parents or carers are happy with the level of support offered Develop joint initiatives and strategies to improve public health, the regional economy, social cohesion and the environment Contribute to the reduction of health inequalities working in partnership with others. The NHS is committed to achieve national targets to reduce health inequalities, and to improve health in the community

Creating consumer demand for health


Coalition building and the creation of public demand: stakeholder mapping should reveal the individuals and groups who can challenge the status quo, or question the power strucutures that are barriers to change. The ability to identify, support, and harness coalitions too challenge strong vested interests will be essential if the enabling framework is to tackle some of the fundamental determinants of health Public mobilisation: to promote change we may need to increase public awareness of the extent to which external influences (e.g. availability of unhealthy products, media activity, advertising, etc) act against their health interests. This may lead to anger and dissatisfaction about manipulation by the industry, similar to that which is often seen when more traditional threats to public healt hare portrayed in the media Social marketing: these techniques are a powerful tool, encompassing issues such as communication, and market segmentation. Social marketing approaches need to sell the required behavioural change and also change the way in which the population accesses and uses health services. On its own, however, social marketing is likely to meet with limited success Responsibility for good health: the general public accepts responsibility for their own health but are aware of external constraints that prevent them leading healthier lives. Most people believe more exercise would improve their health and many would like to take part in exercise. However, there are barriers stopping people from doing this Public attitudes to alcohol: excessive drinking is highlighted as a problem in all lifestyle surveys and a behaviour change is required to address this problem. Individuals believe government has a large role to play in tackling this issue. Barriers to change: The public knows diet has a major influence on health and do want to eat more healthily. However, as with exercise, barriers such as cost and time are reducing their ability to make healthier choices Role of the NHS: there is a lack of research on how individuals feel the NHS can best help them in making healthier choices Improving community health: a focus on children and younger people living healthier lives (diet and physical activity), can provide an opportunity to improve community health in the future Changing expectations: individuals from social class DE (i.e. those most in need of preventive interventions) would prefer the NHS to concentrate on helping sick people and those at risk rather than focusing on preventing disease for the whole population and supporting better health. More information: most people are satisfied with their GP services. However they would like more information about what other services are available More local services: individuals support the idea of community health centres that include services such as speech and language therapy, physiotherapy, wound dressing, GP consultations, blood tests etc.
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AGE

STAYING HEALTHY INTERVENTION General: Preconception advice inc nutrition, antenatal advice, Medicines management: for many individuals medicine taking Maintains/improves their health and mental well-being, prevention and management of gestational problems. Antenatal screening programmes, hearing, heel-prick test, dental hygiene, smoking cessation in pregnant women. Promotion of breastfeeding, peri-natal mental health promotion Substance misuse: Prevent alcohol harm in pregnancy abstinence and brief focused interventions, General: Neonatal screening, childhood immunization programmes, play and physical activity, accident prevention, Reducing exposure to tobacco, oral health, Medicines management: for many individuals medicine taking maintains/ improves their health and mental well-being, Obesity: Weight management, healthy eating programmes, initiation and maintenance of breast feeding Mental Health/child protection: Prevention of domestic violence/ child abuse, parenting skills, behavioral interventions, anti-bullying programmes Cancer prevention: sun safety General: Physical activity, walking cycling to school, accident prevention, Reducing exposure to tobacco, oral health programmes, Medicines Management: for many individuals medicine taking maintains/improves their health and mental well-being, Obesity: Weight management, healthy eating programmes Chronic disease management of long-term conditions e.g. diabetes/asthma, flu & pneumococcal vaccination Mental Health/child protection: Prevention of domestic violence, child abuse problems. Parenting skills, behavioural programmes, crime prevention programmes and support for victims of crime, anti-bullying programmes Substance Misuse: Prevention of underage drinking programmes, regulation of premises supplying alcohol, Brief interventions, Cancer prevention: Sun safety

RISK FACTORS

LINK TO OTHER CLINICAL PATHWAY GROUPS Birth Long Term Conditions

GOVERNMENT AND POLICY CHANGE National Service Framework for long term conditions to reflect needs of pregnant women

Pregnancy/ pre-birth

Obesity, diabetes, alcohol and or drug misuse, congenital abnormalities, mental illness, long term conditions including epilepsy, cardio-vascular disease, respiratory disease

0-5yrs

Obesity, Childrens, End of Life, learning and Mental Health physical disabilities, congenital abnormalities, mental illness, LTC including epilepsy, CVD, respiratory disease, child poverty

Extension of Surestart, Tobacco control to look at home exposure, Promotion and support for breastfeeding, action on child poverty

5-11yrs

Types 1 and 2 Childrens, End of Life, diabetes, Mental Health obesity, congenital abnormalities, mental illness, LTCincluding epilepsy, CVD, respiratory disease, child poverty

Extension of free fruit in schools scheme, Banning vending machines with junk food in schools. Extension of Healthy Schools programmes Review licensing of alcohol premises, and support measures to reduce under-age drinking

43

AGE

STAYING HEALTHY INTERVENTION General: Physical activity, walking/ cycling to school, accident prevention. Reducing exposure to tobacco, smoking cessation, Tetanus and polio boosters, Oral health programmes, Medicines management: for many individuals medicine taking maintains improves their health and mental well-being, Obesity: Weight management, healthy eating programmes Chronic disease of long-term conditions: Flu & pneumococcal vaccination. Mental health/child protection: Prevention of domestic violence/ child abuse, anti-bullying programmes, Mental health awareness, Parental education and support, crime prevention programmes and support for victims of crime Substance misuse: Prevention of underage drinking programmes, regulation of premises supplying alcohol, Brief interventions, Sexual health: Teenage pregnancy programmes improving access to emergency contraception, termination, young peoples sexual health services for sexually transmitted infections, Cancer prevention: Human Papilloma Virus vaccination. Sun safety General: Physical activity, walking/ cycling to school/college/work Reducing exposure to tobacco, smoking cessation. Tetanus and polio boosters, Accident prevention schemes, Oral health promotion, Medicines management: for many individuals medicine taking maintains/improves their health and mental well-being, Obesity: Weight management, healthy eating programmes Chronic disease management: Flu & pneumococcal vaccination, self-management programmes, pulmonary rehab Substance misuse: Brief interventions for alcohol, drug rehab, Alcohol/drug detox programmes, Sexual Health: Reducing unwanted pregnancy, improving access to emergency contraception, termination, sexual health services for STIs, Access to family planning services, preconception advice and antenatal screening, Management of alcohol misuse in pregnancy, prenatal diagnosis of fetal alcohol syndrome, Parenting skills, Promotion of breastfeeding, Smoking cessation in pregnancy Cancer prevention: Testicular cancer awareness, Sun safety

RISK FACTORS

LINK TO OTHER CLINICAL PATHWAY GROUPS

GOVERNMENT AND POLICY CHANGE Extension of free fruit in schools scheme Banning vending machines with junk food in schools. Extension of Healthy Schools programme. Review licensing of alcohol premises, and support measures to reduce under-age drinking. Promote and extend healthy schools transport programmes

11-16yrs

Obesity, Childrens, End of Life, diabetes, Mental Health, alcohol/drug misuse, Birth congenital abnormalities, mental illness, LTC including epilepsy, CVD, respiratory diseases, Smoking, child poverty, learning and physical disabilities, low educational attainment, teenage pregnancy/ parenthood

16-25yrs

Obesity, diabetes, alcohol/drug misuse, mental illness, LTC including epilepsy, CVD, respiratory disease, low educational attainment, physical and learning disabilities, worklessness, teenage pregnancy/ parenthood

Childrens, Planned Care, Long Term Conditions, Unplanned Care, End of Life, Mental Health, Birth

Banning vending machines with junk food in schools, colleges and workplace Extension of Healthy Schools programmes, Promotion of and incentivise healthy workplace schemes Review licensing of alcohol premises, and support measures to reduce harmful and binge drinking

44

AGE

STAYING HEALTHY INTERVENTION General: Physical activity, walking/ cycling to work/activities of daily living, Reducing exposure to tobacco, smoking cessation, Accident prevention schemes, Well-man/women programmes, Oral health promotion, Glaucoma screening, Medicines management: for many individuals medicine taking maintains/improves their health and mental well-being, Obesity: Weight management including bariatric surgery, healthy eating programmes Chronic disease detection & management: Diabetes, hypertension screening, blood pressure and cholesterol management, Cardiac rehab, Stroke prevention, early diagnosis and rehab, Flu & pneumococcal vaccination, Self-management programmes, Pulmonary rehab Substance Misuse: Brief interventions for alcohol and alcohol/drug rehab, alcohol/drug detox programmes, Access to specialist services - transplantation, Support services for families living with alcohol/drug misuse, Management of alcohol misuse in pregnancy, Prenatal diagnosis of fetal alcohol syndrome, Mental Health: Access to domestic violence programmes, detection & treatment of post-natal depression, Mental well-being programmes, prevention of suicide/self-harm Sexual Health: Cervical screening, Reducing unwanted pregnancy, access to emergency contraception, termination, Sexual health services for STIs, Access to family planning services, preconception advice and antenatal screening, Cancer prevention: Cervical screening, Testicular cancer awareness, Sun safety

RISK FACTORS

LINK TO OTHER CLINICAL PATHWAY GROUPS Planned Care, Long Term Conditions, Unplanned Care, End of Life, Mental Health, Birth

GOVERNMENT AND POLICY CHANGE Banning vending machines with junk food in colleges and workplace, Promotion of and incentivise healthy workplace schemes Review licensing of alcohol premises and other measures to promote responsible supply and availability and support measures to reduce harmful and binge drinking

25-45yrs

Familial hyperlipidaemia, smoking, obesity, diabetes, alcohol/drug misuse, congenital abnormalities, mental illness, LTC including epilepsy, CVD, resp disease, learning & physical disabilities, low educational attainment, worklessness, low income, homelessness

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AGE

STAYING HEALTHY INTERVENTION General: Physical activity, walking/ cycling to work/activities of daily living, Reducing exposure to tobacco, smoking cessation, Fuel poverty and income maximization schemes, Accident prevention schemes, Well-man/woman programmes, Oral health promotion, Glaucoma screening, Age related macular degeneration, Medicines management: for many individuals medicine taking maintains/ improves their health and mental well-being, Obesity: Weight management inc. bariatric surgery Chronic disease detection and management: Diabetes (incl diabetic retinopathy screening) hypertension screening, blood pressure and cholesterol management, Heart failure detection and management, cardiac rehab, Stroke prevention, early diagnosis and rehab, Self-management programmes Pulmonary rehab, Flu & pneumococcal vaccination Substance misuse: Brief interventions for alcohol and alcohol/drug rehab, alcohol/drug detox programmes, access to specialist services - transplantation, support services for families living with alcohol/drug misuse, Mental health: Access to domestic violence programmes, mental well-being programmes, prevention of suicide/self-harm Sexual Health: Access to sexual health services for STIs, Cervical screening Cancer prevention: Breast cancer screening, Sun safety

RISK FACTORS

LINK TO OTHER CLINICAL PATHWAY GROUPS Planned Care, Long Term Conditions, Unplanned Care, End of Life, Mental Health

GOVERNMENT AND POLICY CHANGE

45-64yrs

Familial hyperlipidaemia, smoking, obesity, diabetes, alcohol/drug misuse, congenital abnormalities, mental illness, long term conditions including epilepsy, CVD, respiratory disease, learning and physical disabilities, low educational attainment, worklessness, low income, homelessness, osteoporosis, menopause

46

AGE

STAYING HEALTHY INTERVENTION General: Activity ageing programmes, Flu & pneumococcal vaccination, Physical activity, walking/cycling to activities of daily living Reducing exposure to tobacco, smoking cessation, Accident/falls prevention, Fuel poverty and income maximization schemes, Oral health promotion, glaucoma screening, Age related macular degeneration, Medicines management: for many individuals medicine taking maintains/improves their health and mental well-being, Obesity: Weight management, healthy eating programmes Chronic disease detection & management: Diabetes (inc diabetic retinopathy screening) hypertension screening, blood pressure and cholesterol management, Heart failure detection and management, cardiac rehab, Stroke prevention, early diagnosis and rehab, Self-management programmes, Pulmonary rehab. Substance Misuse: Brief interventions for alcohol and alcohol /drug rehab, alcohol/drug detox programmes, Access to specialist liver services - transplantation, Support services for families living with alcohol/drug misuse, Mental health: Access to domestic violence programmes, mental well-being programmes, prevention of suicide/self-harm Cancer prevention: Bowel and breast cancer screening, Sun safety Sexual Health: Access to sexual health services for sexually transmitted infections

RISK FACTORS

LINK TO OTHER CLINICAL PATHWAY GROUPS Planned Care, Long Term Conditions, Unplanned Care, End of Life, Mental Health

GOVERNMENT AND POLICY CHANGE

64-75yrs

Familial hyperlipidaemia, smoking, obesity, diabetes, alcohol/drug misuse, congenital abnormalities, mental illness, LTC including epilepsy, CVD, respiratory disease, learning & physical disabilities, low educational attainment, low income, homelessness, dementia/Alzheimers,

47

AGE

STAYING HEALTHY INTERVENTION General: Activity ageing programmes, physical activity, walking/cycling to activities of daily living Reducing exposure to tobacco, Accident/falls prevention, Fuel poverty and income maximization schemes, Flu & pneumococcal vaccination, Oral health promotion, Glaucoma screening, Age related macular degeneration, Medicines management: for many individuals medicine taking maintains/improves their health and mental well-being, Obesity: Weight management, healthy eating programmes Chronic disease detection & management: Diabetes, hypertension screening, blood pressure and cholesterol management, Coronary heart disease, Chronic disease management, Heart failure detection and management, cardiac rehab, Stroke prevention, early diagnosis and rehab, Self-management programmes, Pulmonary rehab Substance misuse: Brief interventions for alcohol and alcohol/drug rehab, alcohol/drug detox programmes, Access to specialist services, Support services for families living with alcohol misuse, Mental health: Access to domestic violence programmes, Prevention of elder abuse, Management of dementia/depression, Carer support, Mental well-being programmes, Prevention of suicide/self-harm Cancer prevention: Bowel cancer screening, Sun safety

RISK FACTORS

LINK TO OTHER CLINICAL PATHWAY GROUPS Planned Care, Long Term Conditions, Unplanned Care, End of Life, Mental Health

GOVERNMENT AND POLICY CHANGE

75-85yrs

Smoking, osteoporosis, obesity, diabetes, alcohol/drug misuse, congenital abnormalities, mental illness, LTC including epilepsy, CVD, respiratory disease, learning & physical disabilities, low educational attainment, low income, homelessness dementia/Alzheimers

48

AGE

STAYING HEALTHY INTERVENTION General: Activity programmes, physical activity, walking/cycling to activities of daily living. Reducing exposure to tobacco, Accident/falls prevention schemes, Fuel poverty and income maximization schemes, Flu & pneumococcal vaccination, Oral health promotion, Glaucoma screening, Age related macular degeneration. Obesity: Weight management, healthy eating programmes Chronic disease detection & management: Diabetes, hypertension screening, blood pressure and cholesterol management, Heart failure detection and management, Cardiac rehab, stroke prevention, early diagnosis and rehab, Self-management programmes, Pulmonary rehab. Substance Misuse: Brief interventions for alcohol and alcohol/drug rehab, alcohol/drug detox programmes, Access to specialist services, Support services for families living with alcohol misuse, Mental health: Access to domestic violence programmes, Prevention of elder abuse, Management of dementia, Carer support, Mental well-being programmes, prevention of suicide/self-harm Cancer Prevention: Bowel cancer, sun safety

RISK FACTORS

LINK TO OTHER CLINICAL PATHWAY GROUPS Planned Care, Long Term Conditions, Unplanned Care, End of Life, Mental Health

GOVERNMENT AND POLICY CHANGE

85yrs +

Smoking obesity, diabetes, alcohol/drug misuse, congenital abnormalities, mental illness, LTC including epilepsy, CVD, respiratory disease, learning & physical disabilities, low educational attainment, low income, homelessness, mobility problems, osteoporosis, dementia/Alzheimers, increase risk of joint problems and osteoarthritis.

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Appendix 2
Cross-over issues for other clinical pathway groups Guide: Reading across, the pathway on the left would be the lead pathway in relation to the crossover issue. So for example, Birth would lead on breastfeeding, but there is a clear crossover with children. Similarly, childrens pathway would lead on parenting, but there is a clear crossover with birth.

Birth

Children

MENTAL HEALTH Respect Health Literacy Health Skills Nutrition Obesity

STAYING HEALTHY

Pre-conception health Healthy eating during pregnancy Parental obesity Smoking cessation Sexual health services for young people Uptake of screening Uptake of imm and vac Breastfeeding Alcohol/drug misuse Teenage pregnancy Access to maternity services Perinatal mental health.

Parental obesity Smoking cessation Sexual health services for young people Healthy parents Parenting skills Immunization Looked after children Alcohol and drugs Safeguarding Healthy eating Physical activity Childhood obesity

Health promotion, Obesity Smoking Sexual health Mental wellbeing appr, to target group Homelessness Worklessness Wealth/deprivation Screening Cultural issues inc. diversity Diabetes drug effects induced Access to psychological therapies Substance misuse

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Long-term conditions

Planned

Urgent/Unplanned Respect Health Literacy Health Skills Nutrition Obesity

End of life

Uptake of screening Uptake of imm and vac Effective chronic disease management of high risk patients Targeted smoking cessation Weight management Appropriate prescribing and physical activity programmes High-risk identification Early detection Alcohol/drug misuse (prescribed) Expert patient programme Care planning Mental health Morbidity

Health-promoting organisations Pre-op weight management Pre-op smoking cessation Pre-op brief interventions for alcohol Info flow between health and social care IT/Intelligence Coordination

Falls prevention Reducing avoidable admissions Uptake of screening Uptake of imm and vac Effective chronic disease management of high risk patients Targeted smoking cessation Weight management Appropriate prescribing and physical activity programmes

Effective interventions for mental health and well-being of individual and carers Measures to improve dignity HIV/Aids Mental wellbeing Condensing morbidity Having a good death Access to treatment/ technology Choice - where to die Dignity Respect Ageism Respect for individual Access to hospice Care at home

Appendix 3
Membership of the Staying Health Clinical Pathway Group Chair: Deputy Chair: Facilitator: Name Kate Ardern Frank Atherton Kailash Chand Steve Evans Niall Furlong Ray Green Paula Grey Leigh Griffin Neil Harris Andrea Loudon Raj Patel Dr I W Turnbull Val Wass Adrian Watson Carole Wood Lydia Moore Charlie Barker Dr Raj Patel, PEC Chair and GP, Tameside and Glossop PCT Dr Frank Atherton, Director of Public Health, North Lanchashire PCT Dr Kate Ardern, Associate Director of Public Health, NHS North West Position Associate Director of Public Health Director of Public Health GP First on Scene Trainer Cons. Physician & Endocrinologist Dietician Director of Public Health Chief Executive Consultant Nurse for Mental Health Pharmacy Adviser PEC Chair Clinical Radiology GP & Professor of Learning CEHO & head of trading standards Public Health Specialist Head of Midwifery Director of social services
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Organisation NHS North West North Lancs PCT BMA NWAS St Helens and Knowsley Hospitals NHS Trust Manchester PCT Liverpool PCT Sefton PCT Manchester Mental Health and Social Care NHS Trust Cumbria PCT Tameside & Glossop PCT British Medical Association University of Manchester Rochdale MBC Cumbria PCT Liverpool Womens NHS Foundation Trust Sefton BC

our NHS

our future

Urgent Care Clinical Pathway Group


It is vital for urgent care services to be integrated and that the barriers between primary, secondary and social care should be removed
EXECUTIVE SUMMARY
The North West urgent care clinical pathway group focused on three areas of urgent care Out of hours access (OOH) Pre hospital assessment; and Intermediate care and facilitated discharge The group looked at what is happening now to patients and developed a consensus on what good care should look like. The final part of the review focused on the barriers preventing change and made recommendations for the future.
The group believes it is vital for urgent care services to be integrated and that the barriers between primary, secondary and social care should be removed. Financial and other system barriers need to be tackled, so that patients and health care staff have a clearer idea of how services work. The group recommends that trauma should be a regionally managed network, but basic stroke care should be managed locally with commissioners managing variation in care. Intermediate care should be commissioned based on a local health economy analysis of what patients require. Most importantly, the group believes that the key way to ensure that people get the right treatment in the appropriate setting, is the provision of integrated urgent care services, available if required 24 hours a day, seven days a week.

1 53

Recommendations The five main recommendations from the group are summarised below. Recommendation One: PCTs should work with providers to commission streamlined access to out of hours urgent care that will take the patient to the service they need as quickly as possible. This could include a single number for telephone access when this becomes available nationally. Actions Commissioners should commission a multi-professional urgent care network responsible for monitoring the implementation of change, auditing the effectiveness of change through clinical outcomes, and horizon scanning for innovation Networks should commission a piece of work together with urgent care providers to further refine the five levels of care as recommended by the College of Emergency Medicine, in order to standardise OOH delivery services and access to diagnostic services Spread lessons from innovative areas of good practice across the North West and ensure there is some standardisation across the region Shared IT between all partners must be implemented as a priority All units receiving children for urgent care should ensure that staff are present 24/7 who have the appropriate competencies to manage them, as specified in the Tanner report Where payment by results (PBR) is a barrier to service development, mutual service partnerships should be developed and consideration given to pump-priming monies, to allow service developments to proceed Recommendation Two: Urgent and OOH elements of primary, secondary and intermediate care should be commissioned in conjunction with social care, so that a fully integrated and aligned service is delivered to patients. Actions Social and healthcare should be funded as a single service line Development of an inter-professional workforce with a culture of joint teaching and learning Ensure that a robust clinical governance framework is commissioned that crosses traditional boundaries where necessary, to measure patient outcomes in an holistic and meaningful way Mental health, alcohol and drug services and social care need to be fully integrated into urgent care response services. The staying healthy pathway group has accepted the challenge of improving prevention for drugs and alcohol abuse. However, urgent care has immediate needs for support with alcohol and drugrelated attendances. Legislation may be needed to enforce collaboration Recommendation Three: Improving and standardising outcomes from stroke across the whole North West. Actions Department of Health guidance given to commissioners in 2006 must be implemented by every PCT, with Greater Manchester PCTs also delivering the recommendations of the local review of stroke services
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Access to CT scanning should be commissioned to deliver a service of a scan within 24 hours for stroke patients within the next 12 months, moving to achieve a scan within one hour of request between 8am and 10pm, which would cover the majority of stroke patients who could benefit from thrombolysis and head injured patients The role of telemedicine for stroke management and CT interpretation and the trauma resuscitation review in the North West, should be piloted and evaluated in the North West within 12 months, given the geographical constraints of distance and access in the region. If shown to improve patient outcomes, it should become a regional standard of care Recommendation Four: Trauma should continue to be managed locally by the nearest appropriate receiving hospital in the first instance, but trauma care should be managed on a commissioned regional network basis with specific work streams. Actions All hospitals should submit data to TARN UK. The network should be able to demonstrate improved outcomes in patient care through regional audit activity, and use of regionally agreed pathways of care Commissioners should work closely with the ambulance service, emergency medicine and anaesthesia representatives, to evaluate the best way of providing advanced pre-hospital airway management. A three to five year plan should be developed to identify resources and relevant training for a robust and sustainable service and the benefits should be formally evaluated by the trauma network The group strongly recommends consideration be given to improved neuro-psychological rehabilitation for headinjured patients, often young and without support. We are interested in exploring whether the services for stroke rehabilitation can also be used for head-injured patients The group believes that there should be increased neurosurgical bed provision in existing centres; hub and spoke care management for head-injured patients is not as effective as being managed on a neurosurgical unit Recommendation Five: A range of intermediate care services should be commissioned by PCTs that are known to prevent the need for hospital admission, where this is a more appropriate solution to patient need Actions A cost-benefit gap analysis should be commissioned of intermediate and rehabilitation services, to identify what patients want and the most cost-effective place to deliver this care. Any rehabilitation gaps should then be addressed appropriately PCTs should commission intermediate care that is needs-led and not restricted by age

Case for Change


The North West has the second highest emergency medicine attendances and emergency medicine admissions of all SHAs regions after London: In 2006/7 there were 2,209,351 attendances at emergency medicine departments in the North West, an increase of 3% on the previous year We have 25 emergency medicine departments across the North West, 25 walk in centres and 13 minor injury units 530,500 patients or nearly one in four who attended at emergency medicine departments were admitted 1,013,312 people attended walk in centres and minor injury units in the region GP OOH attendances have also increased, by 7% The table below compares the number of emergency medicine attendances for the North West with other regions:

The people of the North West are high users of emergency ambulance services with the numbers of 999 calls increasing every year. The rise was 5% in 2006/07 in the North West as a whole but with some areas e.g. Cheshire and Merseyside increasing at a higher rate. The chart below shows the number of emergency journeys by NHS ambulances in the North West, compared to the rest of the country: % of Incidents Resulting in an Emergency Journey by NHS Ambulance Trust 2006/07

East Midlands

North West

East of England

South Western

Isle of Wight

North East

South East Coast

Attendances per 1000 weighted population

% Type 1 Admitted/ Type 1 Attendances

% Type 1 Admitted/ All Attendances

Transportation rates vary around the country from 60 77%


Source data KA34 publication. The Information Centre for Health and Social Care.

Emergency Medicine department attendances and admission


Source DH hospital activity Statistics 06/07 Source STEIS, HES

Potentially at least 1 million patients should be able to benefit from swift advice and treatment at or closer to their home or scene of the incident rather than being taken unnecessarily to A&E (Taking healthcare to the patient 2005)
Ambulance services have been set targets for responding to 999 calls, to ensure all members of the public can expect the same standard of emergency response service. Emergency calls are categorised according to how severe the situation is: Category A calls the most severe Category C the least severe. All ambulance services are now expected to respond to a category A call within eight minutes. The geography of the region presents an enormous challenge for North West Ambulance Service (NWAS) and equitable provision of access to care. The North West has some densely populated urban areas around Manchester and Liverpool, but a large proportion of our population live in rural and remote areas. Increasing demand for ambulance services has meant that they often miss the call time targets for Category B and C incidents.

Many patients who attend an emergency medicine department, including some of those who are admitted, could be treated elsewhere, for example by primary care services such as health centres and GP clinics. There are a number of different services available and patients are confused about these and how to access them. This was confirmed at the public consultation stakeholder events in the North West. The chart below indicates the number of patient visits to emergency medicine departments over a 24 hour period.

Patient Count

The peak times for attendance are from 12 noon to 2pm and 4pm, presumably reflecting times of GP home visits and when ambulance transport is available.
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West Midlands

Great Western

South Central

Staffordshire

Yorkshire

England

London

A&E Attendances and Admissions 2006/07

The ambulance service has looked at a range of alternatives to transporting the patient to hospital, including the emergency care practitioner (ECP) role and the development of a falls service based in Tameside. This map shows population density within the North West and illustrates the scale of the challenge for ambulance services

The focus needs to be on pathways, not premises. We need to think about the best patient pathway and not be constrained by the buildings currently in use

Single Point of Access for Urgent care


What happens now? Increasing numbers of people are choosing to access care at their emergency medicine department despite increases in alternative service provision, especially after 5pm and at weekends. The open access of an emergency department and the success of the four-hour wait initiative has made the emergency department an easy option for the public to get care. The NHS is working at full capacity and misuse of the emergency medicine department and seasonal increases in demand put a strain on the system. There is a choice of urgent care services in and out of working hours, but we know that members of the public often choose an inappropriate service that means they sometimes have a poorer outcome. Patients are confused about how and which service to access. Some patients from immigrant groups find it particularly confusing to navigate access to urgent care, and use emergency departments for their primary care health needs. This is especially noticeable in Greater Manchester, where many patients are not registered with a GP. There are clear alternatives to emergency medicine in some areas of the North West, such as walk in centres and minor injury units, but unless they are co-located and integrated with emergency medicine departments to provide a seamless service, they do not reduce emergency medicine department attendances. The recent primary care access survey in the North West highlighted the significant numbers of patients dissatisfied with the opening hours of their GP practice outside normal working hours. This feeling was also expressed by the public representatives at the deliberative event held in September 2007. The figure below indicates aspects of primary care services that the public feel need improving: Which two or three of these, in your opinion, are the aspects of public services that are most in need of improvement?
50 45 40 35 30 0% 25 20 15 10 5 0
Making sure services are available to all who Getting things right first time Friendly and helpful staff Keeping me informed of the services Making it easy to get in touch when you have an Quickly responding to an enquiry Being able to contact them at weekends and in the evening

Establishing a Clear Focus


Urgent care affects a wide range of health issues and so it was important from the start for the group to have a clear focus for their review of urgent care services. The group identified three areas where changes could have the most impact within the region. Create a single point of access, which would give members of the public defined and standardised levels of care, whatever their perceived area of need. At the moment OOH services are fragmented. There are many different ways in which the public can access NHS services, with services provided by a number of different organisations Develop the concept of assess to admit rather than the current position of admit to assess. The implications of this for pre-hospital assessment and patients who might need transfer to a tertiary centre needs to be explored, particularly for those with stroke, myocardial infarction or severe trauma Review the barriers and enablers for access to intermediate care and how facilitated discharge can reduce length of stay. This means making sure that support is in place so that people can be discharged as soon as possible this is particularly relevant for older people The three areas outlined above need to be reviewed using the following over-arching themes and principles: Definitions being clear about what we mean by urgent care services Roles and acquired competencies for the urgent care workforce Governance of urgent care services ensuring that there are consistent levels of care Educational support on-going development of the workforce; develop communications and information to educate the public
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Patients and the public are frusrated by: Delays in getting the services they need when they need them Being passed from one service to another and having to repeat basic information about themselves A lack of clarity about which services they should use and when they should use them

In addition, we also have significantly under doctored areas in the North West; according to a report from the National Audit Office (NAO), 14 out of 25 of the PCTs with the lowest numbers of GPs per head of population are in our region. These include areas of high immigrant population so extensive social marketing will be required to make new primary care services attractive and easy to access, 24 hours a day. Current (OOH) service provision GP OOH services are commissioned by PCTs and are either run as a GP cooperative or as a non-profit making consortium. Hours of operation are usually between 6.30pm and 8am, Monday to Friday and all weekends and bank holidays. Most PCTs have now re-tendered for their OOH services and are only commissioning services that meet national quality targets and are judged as value for money. Currently for most people in the North West the first point of access to urgent care is still by phone. The figures below show the average outcomes following a call by a member of the public to a GP OOH service: 35-45% calls result in telephone advice 40-65% calls result in an appointment at a primary care centre 15% calls result in a home visit 1-3% calls result in an emergency admission to hospital There are many different routes for patients to access urgent care services. Patients in Greater Manchester who call NHS Direct and are assessed as needing a GP appointment are then re-assessed by their OOH service. As a result up to 50% are assessed as needing nurse advice only. Patients may also ring the ambulance services or their GP service, or access NHS Direct by phone or on-line, and they can receive a variety of responses. NHS Direct state that 40% of their calls are for medicines information. Many of the calls refer patients onto a further service, with the result that the patient has to repeatedly give the same information. In the North West as in other SHA regions, there is a huge variation in what individual PCTs deliver to patients as OOH primary care services. Access to palliative care medicines are seen as a priority in end-of-life and OOH pathways for most PCTs, but not all provide for re-supply of repeat prescriptions. Often these services are not integrated with other local urgent care services, such as community pharmacies that could manage a significant number of calls and minor ailments, to relieve pressure on emergency medicine departments and OOH services. The new pharmacy contract contains incentives for providing more enhanced services. Since 2005, more pharmacies have been working extended hours, some up to 11pm and up to 100 hours a week. There is no or little electronic sharing of patient information, even between health care providers and certainly not with other services, such as social or local authority services. This leads to inconvenience for the patient, and potentially increases clinical risk. It makes tracking of patients through the elements of the system very difficult in a timely way, for example to manage the second opinion seekers. What would a good pathway look like? In or out of hours it should not make a difference! There is no disputing that commissioners need to work with urgent care services to ensure that they are joined up, and
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that the barriers between primary, secondary care and social care are to be removed. Financial and other barriers also need to be removed, to enable change to take place. Patients need a clearer idea of how services work. Patient choice is also a priority, but the system should be direct the patient to the most appropriate provider of care for their needs, irrespective of how and where the patient accesses the system. If a telephone call is made, the patient should be immediately directed to the appropriate service as part of the same phone call, eliminating the need to phone back during the day and out of hours. Patients would then be seen faster and by the most appropriate person, for example an emergency medicine doctor, a GP, a GP trained nurse practitioner, a hospital trained nurse practitioner, a mental health worker, a falls coordinator, a physiotherapist, a social worker, or district nurse and so on. This pathway allows integration and improved co-ordination of services. Work needs to be done to define a range of services that complement urgent care whatever the time of day, such as rapid access to a falls service, community support teams, next-day consultant out-patient clinics and rapid access to social care packages As part of Lord Darzis review, the national pharmacy reference group is currently working on an urgent care model for pharmacy that not only integrates pharmacy within the pathway for access to medicines, but also includes patient education to support self-care, and an integration of the management of long-term conditions. Other bonus features will come with the implementation of the electronic prescription service, whereby pharmacies will be able to access repeat prescriptions for patients when GP practices are closed. PCTs should commission pharmacies to provide emergency repeat medicines using a PGD model. Case Study East Lancs Out of Hours and NHS Direct Integration and the benefits of local call handling for triage and admission diversion accuracy. There is conflicting evidence on whether NHS Direct has increased the number of patients attending Emergency Medicine departments. However, some health economies have worked well with NHS Direct. East Lancs PCTs OOH consortium has achieved exemplar status, for linking services to NHS Direct in 2002. As part of this, an evaluation of the service was carried out by The University of Southampton (Val Lattimer et al). Dental links to NHS Direct have been set up and East Lancashire is upheld as a leader and model of good practice in this area. NHS Direct has improved the front end call taking and triage function of the East Lancs OOH service. East Lancashire PCT used its commissioning power to see if the improved response could be sustained. It has been. NHS Direct has gradually centralised over the years to improve cost effectiveness. Calls from the core advice service for NHS Direct can be triaged anywhere in the country. Some patients complain that it can take a long time to be called back to be given advice, although in general the core advice service is well liked by patients.

In East Lancs, the OOHs calls are filtered out so they are dealt with locally which provides a much better service. The dental services are considering taking a similar approach with NHS Direct. Local responsiveness is an important lesson. Definitions of levels of care There is currently confusion because of a variety of names, functions and services available in centres providing urgent care, and differences occur between centres in even closely located services. National definitions would improve clarity. The definitions from the College of Emergency Medicine should be adopted as a starting point for more detailed work, which should then be used as a commissioning framework for primary and acute trusts. Suggested definitions are: Community level, based in primary care Minor injury units and walk in centres not usually 24 hour services (see below) capable of some near patient testing and simple treatments, such as wound closure. These will be nurse led Local hospital which provides 24 hour access to emergency medicine, acute medicine, full 24 hour access to X-Ray and CT diagnostics, laboratory services and Level 3 critical care (intensive care) An urgent care centre should include primary care access and ideally be co-located. Streaming of patients to the appropriate practitioner is important District hospital which provides all the above, plus 24 hour specialist services such as surgery, orthopaedics and possibly obstetrics Full DGH with highly specialised services, and may be a sub-regional or tertiary centre Proposed service configuration for an urgent care centre The urgent care clinical pathway group proposes the following service configuration for an urgent care centre: Co-located and intergrated with primary care services, such as a nurse-led walk-in-centre during the day, and a GP-led OOH service 24 hour access to district nursing Access to Haps from 8am 10pm 24 hour access to dental services 24 hour CT provision and capability, to interpret or transfer images for timely interpretation 24 hour access to laboratory and other diagnostic services, for example plain radiography and ECG 24 hour access to social services, for child protection and social care 24 hour access to mental health services and crisis support 24 hour access to pharmacy advice and support 24 hour access to midwifery An integrated clinical governance system Although most elements of the centre would function and be available on a 24 hour basis, not all would be, or need to be, on the same geographical site. The North West already has several urgent care centres each

with different service specifications. These centres should not be just a primary care front end to emergency medicine departments (CEM position statement on Urgent care Centres in Hospitals, July 07), but provide integrated primary and secondary urgent care together with social services. Not all rural locations will be able to have local 24 hour access to CT. In these cases, urgent care will need to be delivered within its limits at a level 2 location OOH service. We suggest that these services could be named primary care assessment centres and include a GP presence OOH.

Assess to Admit not Admit to Assess


Timely assessment of acute illness should be available before admission to the most appropriate hospital bed. In this section of the report, we explore what happens now to different groups of patients, in particular those who need to access stroke and trauma services. For both these groups, we set out what good care would look like. What happens now? An assess to admit policy has different implications for different groups of patients. These are: Patients with simple medical problems suitable for a patient pathway Patients with complex medical problems, often elderly patients and for whom a discharge date can often not be predicted (70% of all admissions) Patients who are severely ill for example as a result of a stroke or MI or severely injured patients: who may need transfer to a higher level of care Many emergency medicine departments as part of the redesign and streaming of emergency care developed a clinical decision unit, which maybe nurse-led, for those patients who are suitable to be managed by use of a welldefined patient pathway with a predicted length of stay. clinical decision units have been shown to be effective in reducing length of stay (refs Leeds & Chester). This approach is appropriate for approximately 30% of all medical admissions. However, the remaining patients are medically complex, often elderly and the decision to admit is very likely to be affected by a lack of information about their pre-existing state of health and also their social circumstances. Such patients are not suitable for being managed on a simple pathway. It is accepted that GPs often admit patients because there are no alternative services available, particularly beyond 9am-5pm and at weekends. However, if such facilities were available in the community, inappropriate admissions could be prevented provided that there is also open access to diagnostics and timely access to the results. To date, initiatives to channel patients to appropriate services and avoid inappropriate admissions to hospitals have been concentrated principally in secondary care by emergency departments, leading to a large increase in the number of short stays of up to one day. The introduction of clinical decision units and senior clinical assessment in acute care, results in early diagnosis, and in associated early discharge. However this is a costly service which is not recognised by PBR tariff, as the highest tariff is for a 48 hour length of stay.

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There is inconsistency the lack of co-ordination across the North West in the provision of alternative facilities. This particularly affects the ambulance service, which has to modify its procedures to variations in local requirements and service availability. Co-ordination and standardisation of the various services provided for different levels of care would be helpful, and also assist the public in knowing what services are available and where. Case Study - Bolton Diabetic Service Secondary care outreach or primary care in-reach - does it matter? It has been accepted that community matrons are most effective when their work is focussed, for example on making sure patients get the right treatment and inappropriate admissions are prevented. From the patients perspective, it makes no difference whether the consultants and specialist nurse support reaches out from secondary care or is based in the community, for example in Bolton the diabetic service reaches into the hospital from a primary care setting, as opposed to the more common situation, from the hospital out to the community setting.

A stepped escalation and de-escalation of care for older patients with complex needs who prefer to stay in their own home, for example, in a virtual ward Integration of primary and secondary care to form an urgent care team, with in-reach or outreach from consultants. The role of acute physicians in the provision of acute clinics could be developed as the specialty grows in consultant numbers Greater integration of social and healthcare, but also of other care partners within and separate from health. This includes recognition that managing a patient at home may still have care implications for a spouse, partner, formal or informal carer Extended hours of GP availability Integration of IT systems to enable Sharing of patient demographics and history Reduced risk to patients, that is, access to most recent prescription drug list A clinical governance system which allows the appropriateness of admission diversion to be evaluated in a multi-professional environment Stroke Services

Case Study - The Virtual Ward To demonstrate the effectiveness of a primary care initiative in isolation from secondary care. Patients with long term conditions use urgent care most in their last year of life. They are most likely to have exacerbations of their illness which may need an escalation in their care requirements. Croydon PCT developed the concept of a virtual ward in 2006, where each patient is managed in their own home. Clinical care is delivered initially by community matrons, and nurse consultants. Each ward has a ward administrator who co-ordinates the supporting services required, and the involvement of the patients GP if required. However, the ward runs from 9am to 5pm, Monday to Friday, and GPs can not admit their patients to it for an escalation in care package. Neither can patients be discharged early from hospital care to the wards. Patients are selected for admission to each of the 10 wards by the PARR prediction tool. The Mayday Hospital in Croydon states that their admissions have increased and that they are not aware of any benefit from the 10 virtual wards. The PCT run system works in isolation to secondary care, as a means of long term conditions management. This seems to be an opportunity lost, as with a different service configuration, it could also act as a means of admission diversion, by escalating care for a patient in their own home. Oldham PCT are looking to develop this use of a ward as a PDSA initiative (Lewis and Vassallo).

What happens now? The international review of stroke care published in 2001 by the stroke trialists collaboration found that patients were more likely to be alive and independent in their own home one year after stroke, if they received multi-disciplinary care on a stroke unit that was part of a dedicated stroke ward, as opposed to a general rehabilitation ward. This set the standards for care on a stroke unit. Patients with transient ischaemic attacks and stroke are taken by ambulance to their nearest hospital for assessment, investigation and admission. Drivers for change The urgent care group identified a number of drivers for change: The biannual Sentinel stroke audit analysis This assesses 12 key elements of care and an aggregate score is calculated. It shows that the care and services that patients with a stroke receive in the North West varies hugely, and is dependent on the area in which they live (see Appendix 2). It also changes from year to year with some teaching hospitals as well as district general hospitals appearing not to meet the basic standards for stroke care in 2006 Development of thrombolysis as a treatment for stroke (10-15% patients are suitable) Access to CT scanning within 24 hours is already causing difficulty for some trusts. Under IST2, patients will need to access CT and a definitive report within one to two hours of the request being made in order to achieve the time window of three hours from onset of symptoms to administration of thrombolysis. Under the current licensed guidelines and processes of care, thrombolysis will not be practicable in much of the remote North West, due to the long distances involved. If the clinical trial IST3 shows benefit from thrombolysis up to six hours after stroke, then more Cumbrian residents may be able to benefit from this

What Will Good Care Look Like?


The urgent care clinical pathway group believes that effective care would have the following features: Extended OOH alternative service provision to avoid admission if possible and where it is safe to do so, and ensure good quality care at home, such as access to intermediate care, extended nursing service, night sitting, and so on
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Stroke physician and CT interpretation availability and the European Working Time Directirve (EWTD) Not all hospitals will be able to staff a rota of stroke specialists and radiologists who can make the decision to thrombolyse. Neuroradiologists were found to be best at CT diagnosis of stroke followed by stroke physicians, followed by ordinary radiologists in an Edinburgh study (ASSET Trial) Drive to centralise services One method of managing the above might be to centralise services but in view of the very short time window, this is not practicable in remote areas, leading to unequal access to service provision, unless changes can be made ASSET 1, (action on stroke services: an evaluation toolkit for providers) Recommendation in this document, together with the recommendation in the National Audit Office 2005, and the advice to commissioners in 2006 from the DH for improvements could save 231 beds in the North West, the highest number in the country and the highest number of TIAs What would good care look like? A review of the Sentinel audit data gives commissioners a clear guide to where services should be improved for the 85% patients who will not benefit from thrombolysis. Each of the criteria in the audit relates to services that should be well within the power of any hospital to provide, if the services are commissioned by the PCTs or practice based commissioners (PBC) groups. Ensuring that all patients in the North West are able to receive thrombolysis if suitable is a challenge because of our geography. Different methods of transport, for example by helicopter, to a centralised service, are frequently not safe options in a mountainous environment. The same environment also makes it difficult to get good enough communications to be able to use telemedicine. However, the potential of the telemedicine system being piloted at Guys and St Thomass Hospitals in London by Tony Judd, and also in Edinburgh, needs further evaluating. This system would be particularly suitable in a remote area. Telemedicine has the added advantage that the stroke physician on call does not have to be in a central location. Thus the rota can be shared across the region by appropriately experienced physicians and radiologists. It would free the thrombolytic treatment of stroke from the need to have a central premises, and still be able to provide the process. Case Study At the Countess of Chester Hospital, all TIA patients are risk assessed on admission using the Rosier score, and at six or 24 hours using the ABCD score. This is used to stratify them into three categories of risk. If <55 years of age, high- risk patients are admitted and/or urgently assessed by a member of the stroke team. Low and medium - risk patients are discharged on aspirin and either dipyridamole or clopidogrel, and are reviewed in clinic within seven working days. If carotid endarterectomy is appropriate, they will receive surgery within two to three weeks of the incident.

Trauma Services What happens now? The present system is that all injured patients are taken to the nearest receiving hospital, irrespective of whether neurosurgery or specialised services are available at that site. All DGHs used to have orthopaedics and general surgery with critical care support. However, with ongoing restructure of healthcare systems, this is changing. For example Rochdale Infirmary will lose overnight surgery and a full emergency medicine department from April 2008, and Burnley and Fairfield Hospitals will not have emergency surgery and orthopaedics. Greater sub specialisation means that some specialist surgery is equivalent to tertiary services, for example in general surgery liver lacerations are transferred to the Royal Liverpool University Hospital, and hip-joint reconstructions are transferred to Arrowe Park Hospital, in the Mersey region. Thus together with the recognised tertiary services of neurosurgery, burns, and paediatric ICU, super specialised services are scattered across the region. The practical problem is that, unlike with stroke patients, the severity of injury may not be immediately obvious to either a paramedic, or indeed a doctor. It could be difficult to know who to transfer to a centralised level of care. As a result, there would be a dramatic increase in ambulance transfers, which would jeopardise the operational balance of the North West ambulance service, and have significant training requirements. Without more funding, it would not be possible to provide this and maintain the current level of service. Drivers for change The urgent care group identified a number of drivers for change: Access to a neurosurgical unit has been shown to have a positive effect on outcome, even where surgery is not required. The Merseyside region has access to Walton NSU, Manchester to Hope Hospital, Preston Hospital has beds for Lancashire patients and Cumbria patients have to travel out of region to Newcastle for neurosurgical support. The group feels that commissioners should drive improved access to neurosurgical beds, and also make provision for neuro rehabilitations, which, is a cinderella service The study of the value of a trauma centre with 24 hour consultant cover in the emergency department versus a trauma service, showed no benefit in patient outcome. There is no evidence in the UK for bypassing the nearest appropriately equipped hospital to go straight to a Trauma Centre (ref Stoke TC v Preston). Nevertheless, the NCEPOD audit, Trauma - who cares?, states that patients who are treated by staff who are accustomed to managing trauma patients have better outcomes As the patients airway may be at risk, following head or other injuries, early management and control of a patients airway has been shown to be of major benefit The group could find nothing to suggest the need to bypass the closest emergency department in order to access better care in a limited centre service with current service configuration. The patient can and often should be transferred on to an appropriate resource once the airway has been secured, and the patients condition stabilised as far as is possible for the journey

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Review of the TARN UK North West web site shows that: - Not all hospitals contribute to this trauma audit and research system - The performance of those that do seems to be unrelated to size or reputation of the organisation. The performance in Oxford, for example shows better results than the regionalised trauma service in London, based on HEM. Case Study - How Audit Benefits Patients An example of good practice is the Greater Manchester traumatic brain injury group, who have re-audited survival in head injury following changes in practice and have found an improvement in survival from 30-40% up to 6080%. This makes a powerful case for trauma audit being compulsory within organisations and across the region. It would be inappropriate to transfer seriously ill and unstable patients from one hospital to another. There was recognition that service reconfiguration must always have the patients welfare foremost in the planning process, so it is proposed that surgeons travel to the patient instead. With networks being used more frequently between a group of trusts, in order to provide EWTD 2009 compliant rotas for some surgical specialties, this situation is likely to be more common, for example the Cheshire and North Wales vascular network. It could raise contracting, governance and health and safety issues for the travelling surgeon

An indication of the trauma load for the region is shown in the table below, supplied by TARN UK. An ISS>15 is regarded as severe trauma, and it is this group of patients who always need the very best level of care to optimise their chances of survival. However, there is an underestimate of the total of trauma patients, as not all hospitals submit data to the centre for analysis. In addition, high frequency injuries such as fracture neck of femurs are no longer required to be included for analysis. Thus, there is a proportionately larger underestimate in the ISS 1-7 group.

ISS DISTRIBUTION BY REGION


ISS REGION 1-7 8-15 16 - 75 TOTAL

Other TARN regions Greater Manchester Merseyside Lancashire Cumbria Total

38847 4741 3894 1430 174 49086

20.1% 20.4% 19.1% 20.4% 15.0% 20.0%

114882 14225 13323 4130 807 147367

59.5% 61.2% 65.4% 58.9% 69.7% 60.2%

39296 4289 3168 1446 177 48376

20.4% 18.4% 15.5% 20.6% 15.3% 19.8%

193025 23255 20385 7006 1158 244829

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Trauma Care for Children What happens now? Children comprise up to 25% of all attendances at a district general hospital. Children with head injuries, burns, or severe haemorrhage which may need surgery are taken to the nearest emergency department for airway management and stabilisation, prior to transfer to a tertiary care specialist childrens hospital. The North West is fortunate to have two in the region, Alder Hey Childrens Hospital and the Royal Manchester Childrens Hospital. The child is transferred by a team from the first hospital. If the child were seriously ill, not injured, a paediatric retrieval team would be sent to collect the child. The time sensitivity of injury consequences is felt to be paramount, and the risk of waiting for a retrieval team as opposed to getting the child to a centre for definitive care is thought to outweigh the potential risk of transfer with a less experienced team in paediatrics. There used to be agreed criteria for transferring patients, but these have lapsed. Children are severely injured less frequently than adults, making it difficult for an individual practitioner to accumulate sufficient experience. Training packages such as Advanced Paediatric Life Support are crucially important for providing an assessment and treatment methodology for the first one to two hours of care of the ill or injured child. Many emergency departments do not have a paediatric trained nurse on duty all the time, so having a member of staff who is APLS trained is very important, at all times. What would good care look like? The group discussed good trauma care for children and highlighted the following features: Staff teams would be multidisciplinary, and have regular and improved training A regionalised rapid response trauma service, doctors with paramedics. These could be seconded SpRs in emergency medicine and/or anaesthetics, and it should be separately funded as a regional service Link the medically based advanced airway management support service with the work of a regional transfer or retrieval team, to ensure viability, cost effectiveness of staff and improve the quality of patient care Network agrees sites for specialist service provision. The issue of surgeons who travel to the patient needs to be explored, plus the practicalities of types of surgery with equipment that cannot be moved, such as cardiac bypass from CTC, Wythenshawe, Blackpool and Preston hospitals Network and commissioners ensure that NCEPOD recommendations are implemented and audit occurs in each unit Explore the use of telemedicine as in Cornwall.and Scotland. X-rays and CT scans are readily transmissible, although there are different software and hardware combinations in hospitals, making reception and interpretation from senders difficult. In Scotland, videocams are used for supervision of resuscitation in outlying departments Ensure that a percentage of staff on every shift are APLS trained, and have experience of managing ill and injured children. Ensure that the clinical competencies mentioned in the Tanner Report are present within the workforce to a high performance standard Agreed protocols for deciding which patients are transferred to a tertiary or other specialist centre, and

what supporting service can be provided if no beds are available Achieve the above by establishing a clinically based regional trauma network, which would be responsible to the PBC hubs and the SHA

Improve Access to Intermediate Care and Facilitated Discharge


What happens now? The urgent care pathway starts in the individuals own home, in the community. Because these pathways are complex, input is required by a variety of providers from different sectors; for example a patient can be discharged home without the walking or home aids they need, because they have to be sourced from separate providers. The present system is fragmented using multiple NHS, social care and commercial providers. Different budgets belonging to different contributing agencies tend to undermine the concept of shared care for a complex patient. The definitive responsibility for getting a patient home and allocating resources in a timely way is sometimes indistinct. Therapists based in emergency medicine departments and AMAUs also assist in preventing avoidable hospital admission. Case Study Good practice was identified in St Helens and Knowsley; both health and social care services have combined to provide seamless discharge packages for children with complex needs.

Case study Three pathways that can work well are those for fractured neck of femur, joint replacements and pneumonia, as they integrate rehabilitation services, which could be hospital or community based. However, community care may be more expensive.

Case Study Many patients who need urgent care turn to the ambulance service as a first point of contact. In many cases the ambulance services decide that a visit to emergency medicine is not essential. This is an opportunity to deal with problems that are developing but are not yet serious enough to require high level intervention. Many falls patients fit into this category. Tameside and Glossop PCT in partnership with North West Ambulance Service have operated a Falls Referral Pilot, which started in October 2006 and the number of referrals to emergency medicine departments has reduced. Further work should be done to evaluate the benefits of early alerts to local services by the ambulance services for a range of conditions, in order to screen and intervene where individuals are felt to be at risk. What would good care look like? Intermediate Care Standard 3 in the 2001 NSF for Older People describes the key functions of intermediate care. The recommendations of the urgent care group build on these principals. Intermediate care should be based on
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comprehensive assessment resulting in a structured individual care plan which involves active treatment and rehabilitation. This must be time limited, normally no longer than six weeks in duration although many interventions are shorter. Interventions are often intensive and must be delivered rapidly at shorter notice in order to avoid the breakdown of health and social care supports in the community. Intermediate care facilities and services provided by social services or the independent care sector, have to be registered with the CSCI (Commission for Social care inspection) or the Healthcare Commission who specify the ages and conditions of patients who can be admitted to each facility. Although most urgent care patients requiring intermediate care will be aged over 65, these services should remain needs led and should not turn people away on the grounds of age. The group recognises, however, that problems can arise as changes are sometimes required to the registration of a facility through CSCI, this is often a lengthy process. The diagram below illustrates the groups proposed pathway for urgent care: Proposed Urgent Care Pathway, the same services which provide escalated care should be able to provide de-escalation back into the community setting

Patient with complex medical and care needs (may not be elderly)

Patient develops exacerbation of long term condition

Deteriorating condition warrants hospital admission followed by discharge straight home, rehab or intermediate care services

Escalating care provision

Gets escalated level of care at home or primary care setting ie: virtual ward

May involve admission to GP supported/community matron led intermediate care bed

De-escalation of care

The need to optimise the pathway of care for older people with complex needs is emphasized below, by Prof Ian Philp, DH lead for older peoples care: The importance of optimising the acute pathway for older people with complex needs as they occupy 70% of acute hospital beds and are likely to suffer from healthcare acquired infections, lack of dignity in care, delays in discharge, and high rates of readmission. We also recognise the interdependence with optimising community based services, including intermediate care and long term conditions management. It is clear that there is an ongoing need to work together to support the reconfiguration of services for older people with complex needs. The recent DH document recommends that multidisciplinary intermediate care in the community should be one of the options considered for older people in order that they receive specialist assessment, and care planning and delivery. This may need a return to consultant led domiciliary visits, especially by the care of the elderly team. The British Geriatrics Society has recommended that the community geriatrician role should be developed (BGS Geriatricians and the management of long term conditions, Feb 2005). This is
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a key component of developing intermediate care in the community as it brings the expertise out of secondary care to support intermediate care services. It is significant that these same issues exist for children with complex long term needs and the elderly mentally ill, as for the elderly with long term conditions. From a GPs point of view, referral to emergency medicine is made because they are often not sure of what else to do, particularly outside of normal hours. A single point of access for all available services should be developed, for GPs and other primary care providers. There is evidence that intermediate care at a community hospital significantly reduces the number of readmissions for a general hospital. In addition, a significantly higher number of patients were independent of community care after follow up, without any increase in mortality and number of days in institutions. The group has debated whether older people actually want to be looked after at home as an alternative to hospital care, and opinion was divided. We need to ask this group of patients what they would prefer.

What would good care look like? The role of community matrons and active case managers, with access to physiotherapy, pharmacy, diagnostics and so on, is proving to be useful in some areas as part of facilitating the smoothest care pathway for more complex patients. In Salford, allied health professionals occupy some of the active case manager posts. In future, we should be matching the needs of the patient to the best person to give that care, irrespective of traditional boundaries of responsibility. From a strategic point of view each health and social care economy should be able to demonstrate robust joint commissioning and integration of services. This is one of the essential hallmarks of excellent intermediate care practice, as many barriers present at service delivery level on the patient pathway where this is not the case. A further key to success is the existence of a detailed strategy for developing intermediate care, the delivery of which is overseen by the joint commissioners. Rehabilitation services Timely availability of appropriate beds for rehabilitation is a problem in some areas, so providing rehabilitation in peoples own homes should be considered. Areas that provide a range of rehabilitation alternatives, such as nurse or therapy led beds and hospital at home-type services, and so reduce the need for hospital admissions include Bolton, Salford, South Manchester, and Liverpool. Hospital utilisation studies across Greater Manchester have shown the benefits of nurse or therapy led intermediate care beds in diverting patients from emergency medicine and MAUs, rather than an acute hospital admission. Several cost benefit analyses of these alternatives have been carried out. Substantial additional costs to community services would be expected through increased hours of service. However Campbell, Karnon and Dowie, found that the cost of hospital at home care for elderly patients was less than hospital based care provided that it did not exceed 14 days. On this basis they secured funding for their rapid response service. They used different costing methods to those used in Bristol and Northamptonshire, where a wider spectrum of care costs were assessed, and thus accept a limitation on the generalisation of their findings. If patients are stepped down following hospital based rehabilitation or other forms of hospital care, it is essential that the local health and social care economy has developed a range of step down options that free up the acute beds in a timely fashion, in order to ensure that delays in discharge are avoided.

The group agreed that the skills for health package would be useful, provided that patient pathways could be agreed first, and work undertaken then to decide what competencies would be required to deliver the pathways. What needs to happen in the future? The future provision of urgent care demands high quality skills from a range of professionals including paramedics, emergency nurse practitioners, GPs, emergency physicians, and acute physicians. The UK Centre for the Advancement of Inter-professional Education (CAIPE) recommends the creation of an inter-professional workforce that can understand each others roles and perceptions, leading to improved communication and collaboration. The proposed model of single point of access will help to breakdown traditional boundaries between professional groups, and enable a culture of inter-professional teaching and learning at the workplace. The Academy of Medical Royal Colleges has called for the strengthening of emergency care training for GP specialist trainees and the development of GPs with special interest in emergency care. The need for incorporation of urgent care competencies has also been highlighted by the Royal College of General Practitioners. The provision of urgent care training to GPs, leading to a higher qualification in urgent care is a valuable option that merits further consideration. Acute physicians could have a useful role in the delivery of this. Training of healthcare professionals must suit the needs of the service now and in the future. In addition, plans for reorganisation of services should give due consideration to the most appropriate level of training of those involved in patient care. Clinical leadership Effective leadership from clinicians is crucial to enhancing the delivery of healthcare within the NHS. Clinicians at the frontline of patient care need to have the motivation and the skills to be able to make changes within their organisations. High quality training focus should not only on clinical areas, but also on management and professional skills. The postgraduate medical curriculum within the North West will continue to address the needs for such skills in a wide range of health professionals. Equally, supporting professionals well after qualification will ensure their continued involvement in improving patient care.

Education and Training


What happens now? Education is determined and provided by each individual professional group, with each medical specialty and general practice also providing teaching for their own medical staff. The curricula are determined by our statutory educational bodies ie the Royal Colleges, the Deaneries and PMETB, and other professional organisations. Paramedics and allied health professionals have their own curricula and schools for delivery. However, urgent care needs to be delivered over a spectrum of severity, and in a variety of environments, by a wide variety of staff. There is a great deal of overlap in each others practice and our educational curricula.

Case Study - PED and SPED courses A small team of educators based at the North Western Deanery have been conducting professional and educational development (PED) and senior professional and educational development (SPED) courses for GPs. The courses are designed to address the need to develop highly skilled clinicians to manage and lead changes within the modern NHS. The courses, part funded by the deanery, incorporate residential modules spread over a period of two years and accredited by the University of Central Lancashire towards a Masters qualification. Over the last 12 years, a number of GPs have gained valuable skills to be able to cope with the complexities of the healthcare system. This scheme has now been expanded to incorporate consultants.

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Major Barriers: What is Preventing this Happening Now?


The barriers to creating a fully integrated urgent care service are: Information technology The biggest barrier to managing patients through a single point of access safely is IT. There is very little shared electronic information between healthcare professionals, social care and patients for example different models of PACS X-ray systems do not communicate with each other Financial flows Financial flows through PBR need to be examined. At the moment PBR does not encourage the right treatment for patients in the right setting, and the new standard contract due to be implemented in April 08 will make it very difficult to commission integrated pathways across organisations The proposed penalties for missing patient service delivery targets could discourage trusts from accepting their share of critically ill or injured patients, who are likely to need a long stay in a critical care area and impair the trusts ability to meet the 18 week elective target Cultural resistance to change Integration of clinical teams is essential if we are to improve urgent care for patients. This must also include changes to working practices for some professionals. However, there are also powerful political constraints to change, namely the will of the electorate Workforce and education We need an appropriately skilled workforce to effectively deliver urgent care .The ambulance service could support alternatives to transportation to acute hospitals if they had the support to develop their staff. There is no mechanism at present to encourage or develop integrated workforce planning. Thus the competencies needed to deliver care do not match patient pathways Public perception and behaviour Currently a significant number of the public see emergency medicine departments as the solution to their healthcare needs and they know that the emergency medicine wait will be under four hours. It will be a challenge to encourage the public to access other services Social care is a separate organisation to health Social worker reviews of patients are often only undertaken when the patient is medically fit. This ensures that the outcome for the patient is appropriate, but can lead to delays, which can then be further complicated by new medical problems. The distinction between medical and social discharge is a barrier, as is the fact that in some areas there is no common integrated pathway, no common processes or documentation Limited alternative service provision Provision for alternative services rarely extends beyond 9-5, Monday-Friday and to further extend hours would be very costly. Job acceptability may become a difficulty for current post-holders if they were required to work unsocial hours. It would need higher numbers of staff and more training leading to increased expenditure. At the moment services are only funded for 40 hours per week, whereas health and social care is required for the full 168 hours per week.
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There are other gaps in OOH service provision as part of primary care e.g. pharmacy, but this can be addressed by liaising with commercial staff No identifiable pump- priming monies to allow service change There needs to be an expansion in primary care services to be effective in reducing bed days and readmissions. However, it is difficult to see how this can realistically be achieved without dual funding during an implementation period. This means that major system changes moving care closer to home will need pump-priming funding Access to diagnostics and results Inadequate access to appropriate diagnostics, interpretation and communication of results is a problem across services, whether these are 9-5 or out of hours. This is made more difficult in geographically remote areas by distance and service provision. For example radiology, will need a system that allows timely interpretation and communication of the results, particularly for stroke and trauma patients. This is likely to involve wider use of telemedicine and increased use of networked clinicians sharing duty rotas across organisational boundaries Lack of regional forum for responsibility, coordination and planning for trauma services Increasing sub-specialisation in surgical specialties and loss of surgical specialties in some hospitals without overall coordinated planning does not help service improvement. Trauma care is currently a fragmented service. In order to provide specialist care for all, severe trauma assessment in a limited number of centres, or super-hospitals would be needed, not just super emergency medicine departments. Staffing these would severely deplete and damage the existing surgical and critical care infrastructures Geographical constraints The geography of the region already presents significant time and transport challenges for patient care. When planning for specialist tertiary transfers we need to take into account that the further the distance travelled, the higher the risk of death in trauma patients. This may be manageable for urban areas such as London, but not in the North West. The natural geography of this region makes it difficult to deliver equal access to the same investigation and treatment options in time sensitive conditions such as stroke and MI, within the current service and transport constraints Service constraints in the ambulance service imposed by centralisation of services Paramedics are not all currently trained in critical care recognition and decision making. Patient transfer over long distances will affect the numbers of vehicles available for other 999 calls and affect emergency response times and achievement of targets Limited staff and skills pool NCEPOD Trauma-who cares? recommends staffing ambulances with doctors who are capable of advanced airway management for injured patients. Anaesthetists are currently struggling to staff EWTD compliant rotas, so there is not a ready pool of trained doctors who could be seconded from existing rotas. The new group of specialists required to achieve NCEPOD recommendations has not been accounted for in current workforce planning calculations. At present wherever they were recruited from would leave a gap in numbers and service delivery

Communication and dissemination of learning This remains a major barrier to good quality and safe practice for patient care. Between professionals, information also needs constant review and updating so that staff are fully aware of services that are available and relevant pathways. The group has identified areas of good practice during the review process which was previously unknown to us, despite being local. There does not appear to be a sound mechanism/medium for sharing information, action learning, pilot results and so on, with the result that we repeat the same mistakes again and do not benefit from each others experiences

Appendix 1
Review of Alternative Models for Urgent Care The group reviewed alternative models for providing urgent care, both national and international. These models are outlined below: In Montreal, Canada, a change in legislation was required to integrate health, public health and social care. A transfer of 30% of funding was needed from hospital into primary care, to achieve the service specification required and address the OOH need in primary care. Strong performance management is a key feature using benchmarking, rather than absolute targets thus encouraging continuing improvement. The Kaiser Permanente system in America provides a large centre, similar to a small district general hospital that provides extended hours and access to urgent care. They control the total number of urgent care attendances as there is a small charge for access. Specialist physicians work out in the community routinely. There is an integrated electronic patient record which patients have open access to. This can be used for patient advice and guidance, extending to services such as an on-line anticoagulant clinic. The patient owns own their record and can input data on to it for regular health monitoring In Tiverton, Devon, two large GP Practices provide a GPSI led service for access to urgent care. and also provide step-up and step-down beds in a cottage hospital environment. 60% of patients are admitted by their own GP. Access to diagnostics is mainly in-hours only. The GP on call service provides medical cover for inpatients as well as staffing the urgent care centre. Although this model of care works very well now, we had concerns that since the GPSI model is no longer favoured by the Royal College of General Practitioners, it is not sustainable in the long term as appropriately trained GPs will no longer be available. The system was also recognised to be expensive

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Appendix 2
Review of Stroke Care: Sentinel Report Comparison of the Sentinel audit data sets for 2004-6 across the North West clearly shows which hospitals have maintained or improved their level of service. The audit reviews 12 criteria relating to patients treatment in stroke units: 50% LOS stay in stroke unit Screening for swallowing <24 hours from admission CT scan within 24 hours Aspirin by 48 hours Physio assessment in 72 hours OT assessment in seven days Patient weighed during admission Mood assessed by discharge time On anti-thrombotic therapy by discharge Rehab goals agreed by multi-disciplinary team Home visit done before discharge Some of these criteria relate to basic standards of acceptable cover. Some units appear to have lost services such as a home visit performed before to discharge. With increased availability of CT scans, it was surprising to note the number of units where it is still not possible to get CT within 24 hours. The group felt that each of these standards should be easily met in every DGH, and available to all, provided that commissioning is sensitive, and performance manages the service provided. The group did not feel that these results made a case for rationalisation or centralisation of services, as improvement in the basics would benefit 85% stroke patients, as close to their homes as possible.

MERSEY & CHESHIRE

GREATER MANCHESTER

CUMBRIA & LANCASHIRE

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Appendix 3
Cross Cutting Themes Crossover issues for North West NHS Review clinical pathways Guide: Reading across, the pathway on the left is the lead pathway in relation to the crossover issue. So for example, birth would lead on breastfeeding, but there is a clear crossover with children. Similarly, the childrens pathway would lead on parenting, but there is a clear crossover with birth. Issues raised Birth Access to acute USS for PV bleed in pregnancy Children Palliative Care provision Tertiary provision Medicines safety Rehabilitation NAI 20% attendances to emergency departments are children - most with * Injury * Temp & unwell Issues discussed or resolved Midwives were unhappy to be included in the 888 number for access. Wanted to be separate from urgent care centre. Joint statement agreed with paediatric group as follows Where both paediatric and adult access to acute services were co-located (and it would be difficult to separate the point of access for the two populations) then there has to be appropriate paediatric experience available to the child and family. This access is seen as crossing primary, secondary, tertiary services boundaries including NHSD Standards are already provided in the NSF for children and the tanner report. Paediatric acute services should be organised along managed and integrated networks, which would be responsible for establishing appropriate standards for care, management and training Specialist paediatric services networks would be organised around specialist lead centres at the hub, with peripheral centres along referral and treatment pathways both in and out of the centres Intermediate and self care Role of the expert patient and parent, The effect that direct payment would have and issues for health promotion Falls prevention Reducing avoidable admissions Uptake of screening Uptake of imm and vac Effective chronic disease management of high risk pts Targeted smoking cessation, Weight management, appropriate prescribing and physical activity programmes Liaison Deliberate self injury/harm Multi-agency working and information sharing Alcohol and illegal drugs and effects on injury and self harm. COPD, renal failure, heart failure urgent care excluded rom care plans and limited access to resources in community prevent admission. Depression provokes OOH access to urgent care often Alcohol. Suggestion from staying healthy group to provide front end staff educated to discuss with patients at time of attendance. Recognition that alcohol is a major problem to both groups and is reasonable for many urgent care attendances and admissions

Staying healthy

Could access to crisis team be via SPA. The mental health group had no issue with telephone referrals to team, but did not support access to individuals. Wanted emergency medicine to screen all new referrals to crisis team. Not willing to be collocated with urgent care centre Problems of under and over 65 difference. Reluctance to review patient who attends emergency department after alcohol (however small). Happy to provide training in assessment to emergency medicine department staff, but not take referrals de novo as part of the urgent care centre. Appointments could not be made for the psych team by another professional. Electronic records a sensitive issue for GPs. CAMHS issue unresolved - under resourced and not very accessible, especially as an emergency

Mental health

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Issues Raised Long term conditions

Issues discussed or resolved Need to develop SPA and alternative Access care plans for revolving door patients Integrated records Virtual ward as alternative to admission Rehab for stroke (hospital or home) discussed. Considered whether neuro rehab for head injured patients could be combined - felt not appropriate because of age difference. LTC group asked to consider plans for this often neglected younger age group Elaboration on virtual ward idea Expectation of extended GP hours could possibly be managed through integration of services in urgent care centre Importance of electronic record emphasised Holder of clinical responsibility for patients of intermediate care is still unclear, especially with OOH services

Planned

Need to integrate all elements of urgent care into end of life care plans. IT infrastructure Catchment areas for End of Life populations Supportive Care Register would be useful Advanced Care Planning linked to LTC communicated to A&E and primary care and OOH (or single integrated service)

End of life

Recognised that patient, relatives or carers ultimately will make a decision at times where to attend, but most would prefer to avoid admission Links with palliative care, especially OOH need to be strengthened. Electronic records of care plan would be ideal so all organisations involved in care could access them

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Appendix 4
Scenarios to test new pathways Case study 1 A 72 year old man has COPD, uses steroids intermittently and regularly to help his breathing. He has had green sputum for 24-48 hrs and is more breathless than usual. His wife died four years ago, and he gets very lonely and depressed. Just before getting into bed, at 8.30pm, he has a severe bout of coughing and wheezing which leaves him exhausted and frightened. 1. What would you expect him to do, with the current systems in place? 2. How would he access our improved pathway, and how would the care he receives differ? lobar pneumonia and severe heart failure. 1. What are the problems today with access to the right facilities for her care? 2. How will the new pathway improve her access to care? Who/where will she be treated to ensure she is safe to travel 30 miles? 3. Will the new pathway help her to get home quicker? If so, how?

Case study 2 A 42 year old lorry driver has had indigestion for the last four hours which has got so bad, he had to stop driving. He is a smoker and has never had his cholesterol checked. He is overweight, and has a family history of hypertension and stroke. He is brought to emergency medicine by ambulance. 1. Would he inevitably be admitted? 2. How could he be risk assessed, and what can be done to determine the need for admission? 3. Will the new pathway offer him an improved service in any way?

Case study 6 Jack is 90, has mild dementia, and diabetes. He has been shivering a lot and vomiting for 24 hrs. The district nurse calls to dress the ulcer on his left ankle. He fell yesterday but didnt seem to sustain any injury. She finds him today, very confused, and sitting on the floor. He has been incontinent and the urine smells as if it is infected. He is unable to get up, even with help. He gets panicky and anxious anyway in an unfamiliar environment. He is the main carer for his wife, who is 92 and has severe rheumatoid arthritis. 1. What should happen to him at this point? 2. What will the new pathway provide for him which will improve his quality of care, life, dignity and independence?

Case study 3 A 56 year old lady with type 2 diabetes has had an insect bite and now has cellulitis around her left ankle. It is very painful and at 5.45pm she phones her doctor. 1. What would you expect to happen now? 2. What difference would our new pathway make?

Case Study 7 Baz, a 26 year old male who has been drinking with his mates, crashes his car on a wet, wintry night through a hedge and into a field. The car rolls and his three mates are thrown out and run off. He is seriously injured, and trapped in the vehicle. It is 40 mins before he is cut out and arrives at hospital 50 minutes after the crash. His GCS is 7 and he has a large boggy swelling on the r side of his head and a r black eye. He is assessed by the Emergency Medicine SHO, and the patient vomits while he is being examined and aspirates. He is tachycardic and hypotensive, with an open fracture r femur. The anaesthetist is called to intubate the patient and XRs are taken in Resus (trauma series) The orthopaedic F2 cannot put on a traction splint, and his SpR is in theatre. 40 mins later, it has been done. The patient then goes for CT, with an unstable blood pressure, after fluid resus with crystalloid (3 litres) of 70/50. He has an extradural on the right, and the scan is discussed with the neurosurgical unit. Arrangements are made for his transfer, but his blood pressure drops further, to 50 systolic. He is taken to theatre and a small tear in the liver is packed. The femur is washed out and splinted properly. 1 Where should this patient be managed now? 2. Summarise the major problems in trauma management. 3. How could this pathway be improved? 4. Can good trauma care only be delivered in a superspecialist hospital, ie - a trauma centre?

Case study 4 John is a 77 year old man and had a R hemiparesis and dysphasia seven days ago. He normally lives alone. He is on statins, nitrates, beta blockers, aspirin, digoxin, metformin and quinine tablets. He is a bit forgetful, and his daughter is worried how he will manage his tablets and to look after himself at home. She lives in London. He still needs to walk with one helper to the toilet and is a bit wobbly on his feet. It is Friday today. 1. What would be the usual discharge arrangements ? 2. How would our new pathway help him, and reduce length of stay in hospital? How will he be supported in the community and where?

Case study 5 Mary Kelly is 82 and usually well except for occasional breathlessness at night time. She has been feeling very muddled and unwell for 24 hrs over the weekend, and Monday afternoon, a neighbour finds her on the floor, gasping for breath, blue and very drowsy. She rings 999 for Mary, who lives 4 miles down a single track, no through road at the base of Skiddaw. She lives 30 miles from her nearest level 2 capability hospital. On arrival at hospital, she is found to be in new AF, with

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Appendix 5
An OOH Emergency Dental Scheme in Greater Manchester operated by NHS Direct and Rocky Lane Dental Practice The introduction of the new dental contract in April 2006 was similar to the new GPs contract, in that responsibility for the OOH Service passed to the PCTs. Incidentally dentists are only contracted to see a patient with an emergency if they are under going a course of treatment, have had work completed within the last two months or the work fails within 12 months. This is because the new dental contract has removed the concept of a patient list from the dental practice. Professionally dentists generally see their own practice patients, as explaining this is some what confusing to dentists and patients alike. Each PCT has a responsibility to provide a service of emergency care for patients for both patients during working hours and OOH. One of the suggestions for PCTs that came from the DH was that they should merge their Dental OOH services with other local PCTs, rather than try to operate in isolation. Economies of scale being the order of the day in areas of the country where patients would not have to travel too far for their emergency dental treatment. In the latter part of 2005 a total of 10 PCTs in Greater Manchester anticipated the contract changes and set up two separate consortia. One covered North West Manchester, the other covering the Eastern, Central and South Western parts of the city. Although the contracts did not offer 100% coverage, they did mean that two dental teams, rather than one from each of the ten PCTs, could cover approximately 600 square miles and over two million residents and visitors. A total of 25 surgery hours per weekend has so far been able to cope with patient demand although Boxing Day 2006 was an exceptional challenge! During the week two dentists are available each evening for treatment or to give telephone advice. All surgeries follow a strict policy of definitive treatment. Approximately 4,406 patients used the services over the past 12 months with approximately 30,882 calls accessing the service for triage. Initially calls are triaged by NHS Direct in its Bolton Call Centre. NHS Direct has a team of experienced dental nurses who are highly trained in phone triage and homecare advice. Over 90% of calls are answered within 60 seconds and 97% are triaged within the hour. Following the nurses assessment the communication system enables confidential patient information to be transferred electronically, via Adastra, to one of six local clinics.

Other services offered by the OOH team include: Patients without a dentist offered help to locate one with the help of the constituent PCTs Follow up treatment arranged via PCTs Every patient receives a follow-up phone call within five days of treatment, just to make sure that all is well. A dedicated web site includes route guidance and maps to help the patients to find the locations of care. The web address is the same as the emergency phone number that the patients already know www.08456018529.com An OOH Domiciliary Service All patients are encouraged to complete a Feedback form. Some quotes are listed below Telephone service very helpful and provided advice and was knowledgeable. Once at the surgery I was impressed at the service provided - very professional and prompt. Thank you! ID 2268 Sept 2007.

Absolutely excellent service. Referred by NHS Direct and received phone call to arrange my dental appointment. On arrival at the hospital I was seen straight away. Fantastic! ID2260 Sept 2007.

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Appendix 6
The two flow charts below show how the service works: Does the patient meet criteria for an Emergency Dental Referral? No Is there a history of Trauma/Swelling/Bleeding?

Yes

Is the on call Dentist available? 18:30 - 22:00

Yes

Is it Friday after 22:00?

No

Refer patient to Dentist

No

Yes

Does the patient meet the referral criteria due to irreversible pain despite taking adequate pain relief?

Does the patient meet the referral criteria due to irreversible pain despite taking adequate pain relief?

No

Yes

No

Yes

Advise to attend A&E Department if the callers symptoms need to be dealt within the hour

Patients should be advised to contact own Dentist or PALS the following working day. Alternatively you can look on www.nhs.uk for local dentists who are registering new patients or who provide urgent access slots for unregistered patients

Give Home Care Advice and arrange appointment for the first clinic available Saturday, utilising all 10 slots if needed

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Appendix 7
Does the patient meet criteria for an Emergency Dental Referral? No Is there a history of Trauma/Swelling/Bleeding?

Does the patient meet the referral criteria due to irreversible pain despite taking adequate pain relief?

Yes

Are there clinic slots available?

Yes

No

Yes

No

Arrange appointment for next available clinic slot

Is it after 21:00? Is it after 21:00?

Patient seen at location of care and treated

Yes

No

Yes

Refer patient to Dentist

Advise to attend A&E Department if the callers symptoms need to be dealt within the hour

Patient seen at location of care and treated

Patients should be advised to contact own Dentist or PALS the following working day. Alternatively you can look on www.nhs.uk for local dentists who are registering new patients or who provide urgent access slots for unregistered patients

Give Home Care Advice and arrange appointment for the first clinic available Sunday, utilising all 10 slots if needed

Refer the patient using the Adastra technical link, documenting LOC and time of appointment in the Clinical Summary

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Appendix 8
Current Access to Urgent Care Out of Hours Services

Patient self refers or rings 999

Patient phones GP telephone number

Patient emails or phones NHS Direct

Patient gets OOH tel. no. from own GP

Call handler advises

Patient advised to phone GP

Advice solves problem

Call handler streams out emergency 999 calls and agrees to phone back - this can take up to 30 mins depending on triage category

Nurse or doctor phones back

Advice given solves problem

Appointment

May need transport by ambulance

Primary care OOH service

Patient discharged/referred to other OOH service

May need transport by ambulance

Seen by A&E dept and/or speciality

Discharged with advice and/or treatment

Admitted if unable to cope alone irrespective of medical need to admit

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Appendix 9
Proposed Pathway for Access to Urgent Care Out of Hours Services

Patient rings point of access number or GP tel no and forwarded on directly

Patient self presents to Emergency Medicine/Urgent Care Centre

Call handler streams out emergency 999 and passes direct to Triage System

Healthcare professionals bypass Triage System to access GP Visits Community Staff

Triage System to assess need for face to face appointment - could be by NHS Direct if locally sensitive

Advice resolves problem

Urgent Care Centre

Advice only

Discharge

GP to see in OOH surgery based in Emergency Medicine Department

Options by direct transfer from urgent care centre: Pharmacy Dentist CPN/Crisis Team District Nurse Midwife Social Services Palliative or Intermediate Care (locally sensitive)

Discharged with advice and/or treatment

Admitted if required

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Appendix 10
Membership of Urgent Care Clinical Pathway Group NHS Review - Urgent Care Main Group Name Ben Atkins Karen Campion Mike Cheshire Denis Burke Andy Darbyshire Saleem Farouk Emma Foreman Suzanne Hinchliffe Richard Lea Brian Lewis Damien Longson Kevin Mackway-Jones Don MacKechnie Phil Haji-Michael Marie Morton Jayne Norbury Malcolm Ridgeway Pam Smith Lynda Taylor Allan Tronconi Steve Ward Marion Waters Specialty Dentist Facilitator Medicine Consultant Physician in Gastro Nurse Consultant - Paediatric Intensive Care Consultant A&E, Assoc Dean Assoc Dir Emergency Care Dir Nursing, Midwifery & Governance Acute Physician GP & Clinical Exec Member Clinical lead on emergecy mh services Medical Director/Consultant Consultant Emergency Med Snr Cons. Critical Care & anaesthesia Clin head of Div of Surgery Matron - Emergency Care GP and PEC member Head of Service, Community Services, Warrington Comm Service Mgr/lead district nursing AHP Manager GP Medical Director of Central Lancs PCT A&E clinician Trust Salford NHS North West Central Manchester and Manchester Childrens Hospitals NHS Trust RCP, London North Cumbria Acute Hospital NHS Trust Royal Liverpool Children's NHS Trust Pennine Acute Hospitals NHS Trust Trafford Healthcare NHS Trust St Helens and Knowsley Hospitals NHS Trust The Royal Liverpool and Broadgreen University Hospitals NHS Trust Oldham PCT Manchester Mental Health and Social Care Trust North West Ambulance Services NHS Trust Pennine Acute Hospitals NHS Trust Christie Hospital NHS Foundation Trust East Lancashire Hospitals NHS Trust Southport and Ormskirk Hospitals NHS Trust Blackburn with Darwen Teaching PCT Warrington PCT Central and Eastern Cheshire PCT Trafford Healthcare NHS TrustTrafford Central Lancs PCT Countess of Chester Hospital NHS Foundation Trust

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Appendix 11
Membership of Reference Group NHS Review Urgent Care Reference Group Name Jenny Allen Francis Andrews Steve Atherton Ben Atkins Deborah Atkinson Paul Bannister Jackie Bene Kausk Chatterjee Nilanjan Chaudhuri Jill cochan John David Julie Dickens) David Duffy Bill Forsyth Gavin Francis Cathy Gadd Jonathan Goodall John Hollingsworth Nigel Horsfield Mark James Lynn Jones Paul Knowles Mo Kumar Harriet Lewis Alison Lynch Shyamal Mukherjee Nigel Randall Anne Robinson Mick Rothwell Yogi Sharma Anton Sinniah Patrick Strong Nick Tierney Martin Vernon Andy Wardman Marion Waters Kim Williams Peter Williams Specialty Comm. Service Mgr/Lead district visitor Consultant A&E Consultant Physician GDP Nurse Consultant for Emergency Cons. Physician in Rehab Ass Med Dir Acute Medicine Consultant Physician Senior SPR in surgery Lecturer/Practioner Snr Div Nurse for Emergency Care (A&E) Therapy Mgr, Medica/Surgical Team Nurse Cons. Suicide and Self Harm PEC Chair/GP in Northwich Cons. in Acute Medicine Lead Nurse, A&E ICU Clinical Dir - Emerg Services Physician Cons. A&E dept Therapy Mgr (OT) Cons & Clin. lead Emerg Medicine GP - Wigan Pharmacist Nurse Consultant Lead of urgent care Cons & Div Dir of Nursing, Clin Support Consultant A&E Consultant Anaesthetist Trust Central and Eastern Cheshire PCT Southport and Ormskirk Hospitals NHS Trust Southport and Ormskirk Hospitals NHS Trust Salford Stockport NHS Foundation Trust Central Manchester and Manchester Childrens Hospitals NHS Trust Bolton Hospitals NHS Trust Countess of Chester Hospital NHS Foundation Trust The Cardiothoracic Centre Liverpool NHS Trust Royal Liverpool Children's NHS Trust The Royal Liverpool and Broadgreen University Hospitals NHS Trust Greater Manchester West Mental Health NHS Foundation Trust Central & Eastern Cheshire PCT Wirral University Teaching Hospital Foundation Trust Mid Cheshire Hospitals Trust Salford Royal NHS Foundation Trust Aintree University Hospitals NHS Foundation Trust East Lancashire Hospitals NHS Trust Lancashire Teaching Hospitals NHS Foundation Trust The Royal Liverpool and Broadgreen University Hospitals NHS Trust Mid Cheshire Hospitals Trust Ashton, Leigh & Wigan PCT Trafford Bolton Hospitals NHS Trust Wirral University Teaching Hospital Foundation Trust Blackpool, Fylde and Wyre Hospitals NHS Trust North Cheshire Hospitals NHS Trust East Cheshire Hospital NHS Trust Tameside & Glossop Acute Services NHS Trust Pennine Acute Hospitals NHS Trust Bolton Hospitals NHS Trust Pennine Acute Hospitals NHS Trust University Hospital of South Manchester NHS Foundation Trust Wrightington, Wigan & Leigh NHS Trust Countess of Chester Hospital NHS Foundation Trust Royal Liverpool Children's NHS Trust The Royal Liverpool and Broadgreen University Hospitals NHS Trust

Consultant Radiologist Cons & Clin Dir. Anaes & Pain

Consultant Physician A&E clinician Lead Nurse A&E Consultant Physician

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Appendix 11
Consultations with other groups, stakeholders; Submissions received and presentations given 1. Presentation to Unplanned Care Board Cheshire West PCT 2. Presentation to Clinical Directors, & Countess of Chester Hospital and local GPs. 3. Presentation and involvement in Primary Care Development Day with Cheshire West PCT, involving community matrons, district nurses and rapid response staff. The scenarios were used to test out responses now and in the future 4. Presentation to the North West Stroke Network due in May 2008.

Appendix 12
References Our Health Our Care Our Say, The new direction for community services, published January 2006, 17, 18, 21, 22, 23 25, 26 27 28 NHS Our Future Interim Report Summary, October 2007. The clinical vision of a reformed NHS JMCC and NHS Confederation published 2007. The reorganisation of the Emergency Services England published by the College of Emergency Medicine and the British Association of Emergency Medicine, July 2007. Direction of travel for Urgent Care: A discussion document, Department of Health, October 2006. Our Future health secured : A review of NHS funding and performance, published by the Kings Fund 2007, Derek Winless, John Appleby, Antony Harrison, Dashing Patel. Building on the best: Choice, responsiveness and equity in the NHS- response document. 9.12.2003 www.dh.gov.uk/en/Consultations/Responsestoconsultations/ DH_4068391 Your Health Your Care Your Say Research Report January 2006 published by Opinion Leader Research and prepared for the DOH. Reforming Emergency Care, published by the Department of Health, published 2007. The Exemplar programme for integrated OOH care, Evaluation report Executive Summary, November 2004, published by the School of Medicine and the School of Nursing & Midwifery, University of Southampton. Raising Standards for Patients, New Partnerships in OOH Care, November 2000. An Independent Review of GP OOH services in England, commissioned by the Department of Health. RCGP Summary Paper 2000/2008
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Safety and Effectiveness of Nurse Telephone Consultation in OOH Primary Care Randomised Control Trial, Val Latimer, et al, BMJ 1998; 317:1054-1059. Effective introduction of Integrated OOH Care in England: An observational study by Val Latimer et al, BMJ 2005; 331: 81-84. Briefing paper on OOH services, medicines supply and the role of community pharmacy. April 2005.PSNC. Delivering urgent access to medicines outside normal hoursMMNetwork. www.mmnetwork.nhs.uk/med-out-home.php Better Care for the Severely Injured: A Joint Report from the Royal College of Surgeons of England and the British Orthopaedic Association, July 2000. Delivering High Quality Surgical Services for the Future: A Consultation document from the Royal College of Surgeons of England Reconfiguration Working Party, March 2006. NCEPOD Report 2007: Trauma Who Cares? Mortality benefit of transfer to Level 1 vs. Level 2 Trauma Centres for Head Injured Patients, K John McConnell, Craig D Newguard, Richard J Mullins, Melanie Arthur and Jerris R Hedges, HSR Help Services Research 40: 2 (April 2005) page 435-454. Injuries Severity Score Analysis by region, date from Trauma Audit Research Network, Omar Bouamra Trend in Head Injury Outcome from 1989-2003 Effects of Neurosurgical care an observational study, Patel, O Bouamra, M Woodford, A T King, D W Yates, F E Lecky on behalf of the Trauma Audit and Research Network, Lancet 2005: 355: 1538-1544.

Report of the Greater Manchester Traumatic Brain Injury Audit Group, September 2005, Audit Group Chair, Fiona Lecky.

Decide to Admit versus Admit to Decide : Working Together to Improve Unscheduled Care in NHS Scotland : Report of the National Conference for Unplanned Care for Medical Conditions, August 2004, published by the Scottish Executive. Delivering Quality and Value, published by the NHS Institute for Innovation and Improvement. This focused on fracture neck of femur, primary hip and knee replacements, acute stroke, caesarean section and short stay emergency care, published by the Department of Health in 2005 NHS Institute Analysis of unnecessary emergency admissions and alternatives, published on NHS Networks 2007 at www.networks.nhs.uk How do they do it , HMO Control, HMO Control Costs, American College of Physicians website, November 1995 ACP Observer. Modernisation Assessment Summary Report 2005 & 2006 Delivering Design for Life focusing on effective, efficient, sustainable improvements at www.mliah.wales.nhs.uk Challenges for the provision of Health Services to senior people in Oldham in 21st Century, J Vassalo, B Lewis, 2007. ASSET = Anglo-Scandinavian Study of Early Thrombolysis (2) Results at 6 months Lancet 1990 May 19;335(8699):1175-8 National Sentinel Stroke Audit, Phase 1 organisational audit 2006,Phase 2 clinical audit 2006 Report for England, Wales and Northern Ireland 2007. Royal College of Physicians, Clinical Evaluation and Effectiveness unit Discharge from hospital: process and practice. Health and Social Care Joint Unit and Change Agents Team January 2003 Improving discharge; intensive care at home. Case study 10. p32 Achieving Timely simple discharge from Hospital. A toolkit for the multidisciplinary team. DOH Aug 2004. Urgent care pathways for older people with complex needs DOH Nov 2007 Discharge from hospital: process and practice. Health and Social care joint unit and change agents team. Jan 2003 Garbsen H, Windspoll R, Johnson R. Intermediate Care at a community hospital as an alternative to prolonged general hospital care for elderly patients: a randomised controlled trial. BMC Public health 2/5/07, 7, 68 (Campbell H, Karnon J, Dowie R. Cost analysis of a hospital at home initiative using discrete event simulation. J.Health Serv Res Policy Vol 6 no1 Jan 2001) CoastJ, Richards SH, Peters TJ, Gunnell DJ, Darlow MA, Pounsford J.Hospital at home or acute care? A cost minimisation analysis. BMJ 1998; 316:1802-1806) Centre for the Advancement of Interprofessional Education. Creating an Interprofessional Workforce: An Education and Training Framework for Health and Social Care.

M. Lakhani, A. Fernandes and G. Archard, (2007). RCGP Position statement on urgent care, March 2007 Academy of Medical Royal Colleges, (2007). Acute Health care services- report of a working party, September 2007. (section 1.13) Urgent Care Pathways for Older People with Complex Needs Discharge from hospital: process and practice. Health and Social Care Joint Unit and Change Agents Team January 2003 Improving discharge; intensive care at home. Case study 10. p32 Achieving Timely simple discharge from Hospital. A toolkit for the multidisciplinary team. DOH Aug 2004. Garbsen H, Winds poll R, Johnson R. Intermediate Care at a community hospital as an alternative to prolonged general hospital care for elderly patients: a randomised controlled trial. BMC Public health 2/5/07, 7, 6 Discharge from hospital: process and practice. Health and Social care joint unit and change agents team. Jan 2003 Campbell H, Karnon J, Dowie R. Cost analysis of a hospital at home initiative using discrete event simulation. J.Health Serv Res Policy Vol 6 no1 Jan 2001 CoastJ, Richards SH, Peters TJ, Gunnell DJ, Darlow MA, Pounsford J.Hospital at home or acute care? A cost minimisation analysis. BMJ 1998; 316:1802-1806 Close J,Halter M, Elrick A, Brain G, Swift C. Falls in the older population: a pilot study to assess those attended by the London Ambulance service but not taken to Emergency Medicine Age and Ageing 2002; 31:488-9 The acutely or critically sick or injured child in the district general hospital - a team response, (The Tanner Report)DH 2006, http://www.dh.gov.uk/en/Publicationsandstatistics/Publicatio ns/PublicationsPolicyAndGuidance/DH_062668

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our NHS

our future

Planned Care Pathway Group

Our main priority has been to develop a generic pathway that reflects our vision and aims, which can be applied to all episodes of planned care

EXECUTIVE SUMMARY

This report sets out the main findings and recommendations of the multi-professional working group that was set up to examine the provision of planned care services across the North West. The groups aim was to identify the changes needed to improve overall care provision and ultimately the health of our population. This review has identified strengths and examples of innovative best practice, but also unearthed inherent weaknesses and problems and these are set out in the report.
The group has now developed a strategic vision for the future that builds on the progress made to-date and also, aims to eliminate obstacles and barriers to change so that everyone in the North West gets the same high standard of care, no matter where they are treated. This report sets out a comprehensive pathway of care based on current policy, which reflects both clinicians and patients priorities and is centred on the provision of a world class service. It shows that planned care can be provided by a number of different providers, including the NHS, the independent sector, social enterprises and the voluntary sector; and in a range of settings, including district hospitals, specialist centres, GP practices, capture assess and treat services (CATS) and independent sector treatment centres (ISTCs). The group concludes that care should be given by the provider best able to meet the needs of the patient, irrespective of whether they are an NHS organisation, as
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long as the values of the NHS are maintained. Having considered all these issues facing the North Wests diverse population, the following actions have been recommended to improve planned care services: All planned care episodes should be booked at a time which is convenient for both the patient and reasonable for the service They should take place within a reasonable time from referral Planned care should represent agreed best practice Patients should if they wish be able to choose their provider of care All planned interventions should follow evidence based guidelines so that all patients receive the same standard of care and treatments irrespective of where they live or who provides care

Quality outcomes should be pre determined and measured and reported for patients to see if they wish to Care should be provided by the most appropriate person, in the most appropriate place Services should be centred around the needs of the patient Our main priority has been to develop a generic pathway that reflects our vision and aims, which can be applied to all episodes of planned care. The feasibility of the proposed pathway and solutions has been assessed internally by the group and externally as part of the ongoing engagement with the public. Scheduled scenario planning exercises will also give us the chance to validate and test out our assumptions. The report identifies possible barriers to implementing the vision and explains how these can be overcome. National policy and operational drivers affecting care delivery have been fully considered. The difficulty of overcoming the problems and addressing the challenges in planned care, particularly ensuring accessibility, fairness and quality care, can not be under-estimated. However, the group is convinced, that these recommendations provide a sound, realistic and achievable model to deliver first class planned care service across the North West.

We have not come up with anything new or radical, or any groundbreaking ideas that no-one has thought of before. We make no apologies for this. If health economies all look at our ideas and translate them into services, and if we succeed in getting even these basics right, then we will truly have world class health services in the North West.

Overview of the NHS in the North West


NHS North West has a population of over seven million people and oversees a budget of over 11 billion across its organisations. These are: 24 PCTs 29 acute care trusts, including 11 foundation trusts 11 mental health trusts including the learning disability trust at Calderstones One ambulance trust Average spend per head on healthcare in the North West equates to 1,357 per year. Across the North West, there are approximately 1,285 GP practices providing 4,392 GPs This equates to 63.8 GPs per 100,000 population. Currently, the North West is considered to be under doctored in several areas and procurement of more primary care capacity is underway. There are 7,219,728 patients registered with a GP and the average list size is 1,644. However, lack of GPs in under doctored areas has resulted in higher than average list sizes in many areas. We employ 210,483 staff and contribute 11% of GDP to the region. Planned care in the North West Planned care within the North West is delivered by both traditional and non traditional NHS providers. An overview of the planned care activities carried out within the NHS in the North West is given below with the latest waiting time data. Planned care activity Total number of patients treated in hospitals Elective/planned appointments Inpatients Day cases Total number of patients waiting for treatment Number of GP consultations 2006/07 numbers 1,631,524 844,884 308,192 515,181 103,412 38,000,000

Introduction
It is a huge ask to get a group of practising clinicians to carry out a piece of work which involved not only reviewing the current service across the North West, but also defining how high quality planned care should look. However, we have been overwhelmed by the support and enthusiasm amongst clinicians for this task. For once, it seems that we are giving the people who provide the service the chance to say how they feel it should look. Perhaps, more importantly, we have asked the people who have day to day contact with patients, relatives and carers, and who listen to their views and comments about what is important to them. The members of the group brought insight and expertise from a wide range of specialties and disciplines within various healthcare professions and education. There were commissioners and providers, giving us healthy tensions and wide ranging ideas and opinions. We did not have much time, but we feel we made the most of the limited sessions to come up with some basics. We hope that local health economies will take what we have produced and build on it to offer seamless, accessible, high quality services to their patients. Planned care covers a vast range of services, and it was impossible to do justice to each and every speciality across primary, secondary, tertiary and community care. We tried instead to look at the basic common themes across all services and areas and to set out what we felt were the important things to get right, such as the use of high quality, evidence based care all the time, everywhere. We talk a lot about pathways and these are vital. They should be seamless and patient centred, as well as adhering to the highest clinical standards.

Across the North West considerable improvement has been made in reducing long waits as the chart below illustrates.
Inpatient Waiting List Number of Patients Waiting

Weeks Waited

Financial Year

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However this fails to reflect the true picture of low waiting times in some areas and high in others. The tables below illustrate the current position for both inpatients and outpatients across the North West.

Reducing MRSA bacteraemia rates National Sentinel Audit of stroke care Access, including two week rapid access chest pain service, four hour A&E waits, thrombolysis, and waiting time for diagnostic tests Patient needs and wants The group has welcomed the impact of the consultations taking place nationally and locally as part of the Darzi deliberation events. The findings of these events have been included in the groups discussions and there is general support for: Faster processes and response times Clear and consistent pathways for people with specific conditions Choice about where to have care and the need for more community settings Personalisation and tailoring services to the individual In particular, the group acknowledged and agreed with the publics prime concern that all patients should receive the same standard of care no matter where they live or which clinician provides that care. Morbidity rates/inequalities An assessment of the 2007 England health profile emphasises the current north/south divide, with the poorer health in the north of England in comparison to the south. Key characteristics and comparisons of health in the North West are highlighted below.

Case for Change


As part of the review, the group looked at the case for change and why things need to improve. In the North West we have a large, vibrant and diverse region covering the largest geographical area of any of Englands 10 strategic health authorities. Our population of more than seven million includes inner city and rural areas, with wide range of needs reflecting considerable social inequality. We are living longer but we are not living better. The following illustrates some of the issues facing the North West: Seventh worst region for low income 16% of people are on benefits Over one quarter of children live in poverty 23% of adults are binge drinkers Over six out of 10 adults are overweight or obese Only 11% of adults are physically active Highest level of drug misuse in England Highest level of long term mental health problems in England Inequalities begin from birth and although we are making progress, the North West is trailing behind as the second worst region in England for life expectancy. Life expectancy for females in England is 81.1 years, but in the North West it is 79.9 years. Life expectancy for males in England is 76.9 years, but in the North West it is 75.4 years. In their 2007 annual health check, the Healthcare Commission identified under-achievement in:
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ENGLAND % Children in poverty Adults who smoke Binge drinking Life expectancy at birth (male) Life expectancy at birth (female) Deaths from smoking easr Early deaths - circulatory easr - cancer easr Feeling in poor health Source: health profile 2007 21.3 26 18.2 76.9 81.1 234.4 90.5 119 7.8

NORTH WEST % 25.3 27.4 23 75.4 79.9 279.3 108.6 132.6 9.6

The group acknowledges that the full commitment of the wider health economy and societal changes would be necessary to eradicate these inequalities. Current provision of care issues Other reasons for change include: Inequitable access to care across the region, particularly in relation to diagnostics Quality of practice and care is variable Insufficient emphasis on prevention of ill health

Good Quality Care and the Barriers to Implementation


The group looked at what makes good quality care and what prevents this happening now. Key principles The shared expectation of the group is to develop a model of planned health care that ensures timely, high class care, delivered as locally as appropriate and in line with consistent protocols and outcomes. Its vision is of a more holistic approach to care, ensuring prompt attention and more convenient appointments within the overall 18 week referral to treatment framework. This would mean less disruption to daily life, faster access to treatment, less time spent in hospital and more services provided in community settings. A key pre-requisite of the vision is the need for patients to be better informed and involved in decisions about their care. Aware of the overlap with other clinical pathway groups, this group has defined planned care as being any planned interactions between a patient and health professional for which, the date and time has been predetermined. What is good quality planned care? Planned care should be pathway based, using evidence based pathways that are systematically audited so that all our patients receive the same high quality of care, wherever that care is provided. Access into the pathway should be at any point which is appropriate for the individual patient and may vary depending upon where the patient initially presents. Doctors in A&E and out of hours services should have access to the same pathways, avoiding the need to pass patients backwards and forwards to GPs to gain access to referral or diagnostic tests. This should be facilitated by timely access to electronic care records. Doctors in primary care, in and out of hours, and in A&E departments should be able to access appropriate diagnostic tests for their patients without the need to resort to secondary care referral simply to obtain an investigation. Access to all stages of the patient pathway should be timely and, as far as possible, convenient for the patient. In primary care this means all patients should be able to book a routine appointment with a healthcare professional within 48 hours, that these appointments may be arranged in advance to allow patients to plan around work and family commitments, and that routine primary care is available outside of normal working hours. Patients should not have to jump through hoops to book these appointments. Hundreds of patients trying to get through to practices by phone at 8.30am is unacceptable. Booking should not be restrictive and IT solutions such as internet booking should be considered. Service availability and particularly extended hours services should be tailored to the specific needs of the local catchment population. This local flexibility and authority is particularly necessary to reflect the diverse needs of our area. We recognise, however, that modern, effective primary care is far more than just GP services. Nurse practitioners,
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practice and community nurses, pharmacists, mental health professionals, alcohol workers and many more provide high quality, integrated modern primary care. To extend hours without extending provision of these services would limit the effectiveness of the care offered to patients who access services outside normal working hours. It is clear, therefore, that extended opening hours cannot be achieved without adequate resources and we must, at all costs, avoid attempting to do this by diluting the daytime service as this would only divert services away from those in greatest need such as the elderly, the ill and the very young. Patients are not being empowered to get involved in their own care to the level they could and should be. Patients should be meaningfully involved in decision making regarding their care. Patients should realise that, increasingly, a doctor may not be the most appropriate person to deliver their care at every consultation and that triage systems may be used effectively to direct them to an appropriate healthcare professional. Patients should be fully informed about the range of healthcare professionals who make up a health care team and educated to use these professionals appropriately so that skill mix can be increased and care can be increasingly cost effective while remaining high quality. Effective education programmes within primary and secondary care are needed to help implement the pathway. Access to diagnostic services should be timely, adhering to the principles of a total 18 week pathway regardless of where the diagnostic test is accessed. Reporting should be rapid and communication of results should be electronic, allowing both primary and secondary care clinicians to access test results easily and quickly to avoid duplication of investigations. Patients should be told their test results as quickly as possible to avoid unnecessary anxiety. Simple, high volume investigations should be provided within a primary care environment to allow convenient access for patients. This is especially important for those patients who require regular investigative tests. Where possible, and clinically appropriate, diagnostic investigations and their results should be available as part of a one stop assessment service. In particular, where the episode of care relates to a suspected cancer diagnosis then anxiety should be minimised by having investigations and results available at the first outpatient consultation. For patients whose pathway requires referral for specialist opinion or for surgery, this referral should be made in consultation with the patient. Ideally all referrals should be made electronically using the choose and book system, allowing patients to exercise choice of time and location of appointments if required. The group recognises that public views on the importance of choice varies, with the majority placing a higher priority on comprehensive and consistently high quality care. However, it is felt that choice itself is an important driver to make the changes needed. The importance of the availability of an effective choose and book IT system that allows providers to populate the directory with information sensitive to the locally agreed clinical pathways is stressed.

That will require providers to be sensitive to locally agreed pathways when populating choose and book and for directories of services to be much clearer than they are at the moment. Once the maximum 18 week pathway becomes the norm in all areas, it will be important for referrers to recognise it and adapt their behaviour accordingly. It must be assumed that patients will move very quickly from referral to surgery and therefore patients should only be referred for routine surgery in optimum condition. Patients with concomitant comorbidity, including obesity, should have their condition optimised before referral to allow best outcomes from surgery and to reduce complications. In summary: All planned care episodes should be booked at a time that is convenient for the patient and reasonable for the service They should be within a reasonable time from referral Planned care should represent agreed best practice Patients should if they wish be able to choose their provider of care All planned interventions should follow evidence based guidelines so that all patients receive the same standard of care and treatments, no matter where they live or who provides care. Quality outcomes should be pre determined and measured and reported for patients to see if they wish to Care should be provided by the most appropriate person, in the most appropriate place Services should be centred around the needs of the patient Our main priority has been to develop a generic pathway that reflects our vision and aims and which can be applied to all episodes of planned care. Identified below are the key stages of a generic pathway with the associate qualitative standards required to delivery uniformly first class care. It is recognised that these will need to be tailored for individual use. Barriers to implementation The barriers to implementing these changes now are : Information technology A major barrier to effective care is current concern concerning patient confidentiality and overall security. The group fully supports the development of secure electronic record, which has multi level access and which is shared across all health providers. The current barriers to this relate to data public security concerns. Health professionals must be assured that personal patient data is secure and access to records is controlled via robust audit trails. Personal data is sacrosanct and concerns undermine patient confidence. The group feels that shared access is ultimately for the greater good of the patient. It is imperative that current technical and operational issues are resolved. Payment by results (PBR) PBR is not a payment for a result, but a payment for a transaction irrespective of whether the transaction resulted in a positive clinical outcome. The group agrees that funding mechanisms can be a useful driver to change behaviour and
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stimulate innovation. The group supports a payment for an activity mechanism, but this must be a payment that can be split for differing elements and rewards providers for delivering quality outcomes. A system for remunerating quality outcomes is currently being piloted in the North West and the group welcomes the approach and would support speedy roll out when appropriate. The clinical pathways designed by the clinicians must be supported by the contracting and financial framework. Bold innovative pathways need to be underpinned and supported by the financial system, not hindered by it. Human barriers The group feels strongly that human resistance is a key barrier to delivering the pathway vision. Our ideal is that all health professionals should work to protocols and guidelines of care and processes that support these models and are evidenced on best practice for the majority of patients. Deviation from these should be the exception not the norm, but protocols should not stifle innovation. It is felt that this level of human resistance will continue and that effective strategies to manage change will be required. Sectoral barriers Increased cross sectoral working is essential. There should be no barriers between primary and secondary care and the group feels that a model which encourages total health budgets on a geographical basis should be developed. Joint commissioning for health and social care should be the norm. However, the major threat to this is the potential for health budgets to be compromised by the funding systems in place for local authorities. Functional relationships need to be further strengthened between primary and secondary care and need to go beyond information sharing and an IT system to create a service of teamwork and interdependency. Patient expectations Managing patient expectations is seen as a major barrier to implementing the pathway. Our view is that healthcare should be provided by the most appropriate person in the most appropriate location. This does not always mean by a doctor in a hospital or health centre. We need to educate our patients on a much more vigorous footing to understand that they do not always need to see a doctor or go into hospital, and that other health professional or self care may be more appropriate. Planned care services not available 24/7 Current uneven and inadequate access to planned care services out of normal hours is highlighted as a barrier to the pathway. Access to routine care needs to be improved to allow more cost effective use of resources, particularly infrastructure and equipment to increase availability, meet demand and reflect patient aspirations and wishes. This approach should encompass primary, secondary and tertiary care. The group feels strongly that extended hours requirement and increased accessibility proposals need to reflect the specific local circumstances of the individual PCTs. One size can not fit all given the geographical diversity of our region. Flexibility and sufficient resources are the key to reengineering the service provided. Patients should be meaningfully involved in decision making regarding this aspect of their care. Continuous service reorganisations The series of structural reorganisations has resulted in some

inertia in the system and some reluctance to deliver major change and innovation. It is felt strongly that the current system is still not the best, but any changes to reflect the need to move to total budgets on a geographical basis should be planned in advance and delivered in a way that does not impact upon patient care. The scale and frequency of service re-organisation has reduced available management time and delayed decision making. The group feels that a period of consolidation is required so that improvements can be implemented in a suitable environment. Unscheduled care A major barrier to the delivery of planned care is the requirement to provide unscheduled care on the same site, as by definition this is often urgent and takes priority. The group has acknowledged the inter-relationship between urgent care and planned care, which is frequently delivered by the same personnel. The importance of effective capacity and demand planning has been stressed and the need for equitable distribution of resources to both areas. The group recommends that definitive separation of planned/urgent care beds would be the ideal, but concedes that flexibility will be required in certain circumstances. Transition care The group feels that current transitional care arrangements fail to meet pathway aspirations. For both children to adult and mainstream to elderly pathways, robust transitional arrangements based on the clinical conditions of the patient rather than generic disease age profiles are needed.

need and that that provider could be IS or NHS based, as long as the values of the NHS were paramount and that provider cherry picking of services is minimised.

Implications for Enablers


Quality The pathways of care should be linked to a programme that rewards quality. Quality should be the prime consideration at all stages of the pathway and the group believes that if the barriers between sectors were abolished, quality could be the underpinning principle for commissioning rather than cost. Key enablers commission for quality by PCTs and all organisations, ensuring quality through robust clinical governance arrangements. Information Information needs to be timely, accessible to all sectors that have a legitimate need and meet the needs of the service and patients. Real time data entry is required and all health professional must play their part in the care record and data entry to support a live record. Information reports need to be pro-active and not reactive. Data security concerns need to be addressed urgently. Innovation The pathway should be subject to continual innovation and review, with mechanisms that allow clinicians and managers to share best practice. It is crucial that the aim to produce consistent care should not stifle innovation through the use of over rigid pathways. Workforce, education and training The key to delivering our vision is the availability of a suitably trained, motivated and skilled workforce. Organisations that embrace education and training are associated with better quality outcomes. The group recommends board level responsibility for training from the DH level downwards and that CEOs within the SHA should have training goals as part of their annual objectives. Each service contract should include an explicit training element that identifies how much should be allocated to training and the expected outcomes. This way, the development of the future workforce will be protected. Rather than sacrificed at the altar of service delivery targets. A adequate, broad based, generic, modular training is needed to develop a flexible workforce that will evolve in line with the changing needs of the NHS. Currently numbers entering training at undergraduate and various postgraduate levels are determined, by and large, centrally. The trusts that actually recruit and employ staff once they are trained need to be more involved in workforce planning. Accountability - local and national Accountability should be at PCT level, overseen by the SHA with a requirement to adhere to national principles and policy outlines. Commissioners should ensure that adequate lines of communication are available to enable the view of patients to underpin the decision making process. Ideally, politicisation of health care decision making should be avoided. Leadership within organisations Confidence in leadership is an important enabler. Pathway stakeholders need assurance that the vision can and will be implemented. The vision needs to be clinically led at a local level.
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Implications for Delivery Models


Changes to the delivery of healthcare, in terms of who delivers it, where and how, will be essential for the pathway to be delivered Physical infrastructure The group acknowledges the increased investment in infrastructure that has taken place and the improvements to facilities and accessibility for patients. It also recognises that for a streamlined patient focused pathway to be delivered, each local area must reassess where different elements of that pathway should be delivered. This is particularly relevant given regional variations in service availability and quality and will undoubtedly result in discussions about locations and numbers of DGH, primary care, outpatients and tertiary centres. The group has no firm view on how these decisions should be made, except that they should be based on clinical evidence, supported by patients, and not be unreasonably affected by political requirements. The group feels that more pragmatic discussions need to take place with the public on these issues and we must not shy away from being clear about services and buildings which are unsafe and unaffordable. Local priorities and needs should be the drivers underpinning the infrastructure configuration. Similarly car parking and public transport issues will be affected by our pathway and clear consideration as to how to meet patients needs, but in an eco friendly way is required. Cooperation not competition The recent policies in regarding plurality of service provision have resulted in some major changes to how healthcare is delivered and practised but has also alienated a number of health professionals. The group feels that healthcare should be provided by the provider best able to meet the specified

Local clinical leaders must be able to continue to influence service developments and policy. The group fully supports the drive to develop leadership, particularly clinical leaders. as they are the key to delivering change. It must be recognised that leaders should be appointed based on their suitability for the role and ability to do it and not solely because of their professional background.

Recommendations
The main recommendations of the planned care clinical pathway group are: Clinical care pathways should underpin the delivery of planned care Care should be given by the provider best able to meet the needs of the patient, irrespective of whether it is an NHS organisation, as long as NHS values are maintained All planned care should achieve the following key standards: Booked at a time convenient for patient and service The patient should be treated as soon as possible The treatment should represent agreed best practice Patients should be able to choose their provider All treatment should be evidence based All patients should receive the same standard of care Quality outcomes should be pre-determined and measured Clinical care pathways should underpin the delivery of planned care Accessibility and service availability outside normal hours should be determined locally, reflecting individual catchment population needs and demands The payment mechanism should reward the delivery of quality outcomes

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APPENDIX 1
Membership of clinical pathway group NAME Rob Barnett Mark Bennett REVIEW ROLE Member Member DESIGNATION GP & Secretary to the LMC Nurse Consultant - Medicine Associate Director of Performance Clinical Director for Surgery Consultant Radiologist & Regional Adviser Ann Dingle Amanda Doyle Hilary Fewins John Hodgson Jim Johnson Andrew Jones Martin Kelly Raj Kumar Carol Makin Jane Muller Alan Nye Caroline Sanders Bill Tamkin Lesley Walters Rita Robertson George Hurst Member Chair Member Member Member Member Member Member Deputy Chair Member Member Member Member Member Member SHA Lead Consultant ENT Surgeon PEC Chair/Medical Director Consultant Radiologist PEC Chair Consultant Surgeon Consultant Urologist Associate Postgraduate Dental Dean GP Warrington Consultant Colorectal Surgeon Deputy Director of Public Health GP Nurse Consultant Urology & Sexual Health PBC Chair (South Manchester consortium) Head of Physiotherapy Services Director Public Health & Strategy Assistant Director Lancashire Teaching Hospitals NHS Foundation Trust Warrington PCT NHS North West Manchester PCT ORGANISATION Liverpool PCT Southport & Ormskirk Hospitals NHS Trust Jennifer Butterworth SHA Lead Leena Chagla John Curtis Member Member NHS Northwest Southport & Ormskirk Hospitals NHS Trust Aintree University Hospitals NHS Foundation Trust Mid Cheshire Hospitals Trust Blackpool PCT The Cardiothoracic Centre Liverpool NHS Trust Western Cheshire PCT North Cheshire Hospitals NHS Trust East Lancashire Hospitals NHS Trust and North Western Deanery North Western Deanery Warrington PCT Wirral University Teaching Hospital Foundation Trust Cumbria PCT Oldham PCT Royal Liverpool Childrens NHS Trust

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our NHS

our future

Mental Health Clinical Pathway Group

EXECUTIVE SUMMARY

There is no health without mental health

Mental health problems are both a high financial and distress burden on individuals and society. In addition to the direct impact of symptoms on the individual, there are potentially significant impacts such as loss of work and productive roles, loss of independence, physical and mental health interactions, impacts on families and carers. Many of these are preventable or can be reduced and minimised by appropriate help and interventions, and this can often be provided by health and social care systems. Many others require input from a variety of sources including, but not limited to, education, training, employers, housing providers and the media. Mental health problems cannot simply be addressed by reactive health interventions or by specialist mental health services. Commissioning needs to be based on a whole system approach, including joint health and social care commissioning plans, with defined outputs and service user defined outcomes Having skilled staff in place in any setting where people with mental health problems may appear, such as physical healthcare settings, will help. This means moving away from a one size fits all approach and creating a workforce with the right skills to deal with those who access them. Mental health problems are common and therefore basic skills should be common, with stepped care and stepped skills for more complex needs.
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There is clear evidence that mental health systems can deliver excellent quality but this is not consistent enough. Effective use of care pathways is the best way of improving quality in a meaningful way. Service users and their quality of life must be at the core of service design and delivery. Their views plus the views of carers, the public and staff must shape the outcome measures of care pathways. The above are true at national level and as the main body of the report demonstrates these are significant issues for the North West. The region has a historical pattern of under investment in adult mental health services, which the North West SHA and commissioners across the region are starting to address. Comparative funding in other areas of mental health is less well benchmarked. When compared to other regions, the North West consistently comes out above average in terms of rates of mental health problems and resulting disabilities and risks, and on many issues ranks in the worst two or three regions out of 10. There is a wealth of benchmarked information including the views of thousands of North West service users in the Healthcare Commission service user survey. Staff and service users, carers and the public are frustrated that data is widely available from a host of sources such as the NHS, local authorities, regulatory bodies such as Healthcare Commission and Monitor, groups such as the Picker Institute, MIND, Age Concern, Alzheimer Disease Society and many others. This data is based on staff, user, carer and public views and experiences, but it is not routinely analysed and used to support and enhance

commissioning and service provision. Too much effort appears to go into collecting more and more data, leading to consultation fatigue. There is considerable good practice within the North West and we include a range of examples in the appendices many of these are of national quality and some are world class. This shows that the North West can deliver. The available data shows that there is still too great a variation in standards which can not simply be explained by different levels of need or investment. Healthcare Commission data and national healthcheck results show that the North West has too many services still below the excellent level on quality or the good level on use of resources. The region has no mental health/learning disability services ranked as excellent both for quality and use of resources and we still have some below good on either. Evidence on primary care and third sector delivered mental health services is less accessible and robust, but again paints a very mixed picture. This report cannot cover all of the issues underpinning this, nor can it cover all of the various care pathways required in adequate detail. Mental health and well being are not the sole prerogative of mental health care pathways or of healthcare and we have shared many crosscutting themes with the other clinical pathway groups in the region. To demonstrate the range of potential care pathways but do one in sufficient detail to illustrate the main points, this group has chosen to work up an example dementia pathway. We have collaborated with the other mental health clinical pathway groups in England, who are each using different examples so that a good spread can be seen by referring to each regional report. The key messages in this report are that the North West cannot improve overall health and wellbeing without properly addressing mental health. There is considerable variation across the region even in areas with similar characteristics or in geographical proximity. When commissioners and providers get it right we have clear evidence of excellence. Many of the steps required to deliver excellence across the North West are about better commissioning across whole systems, with providers being encouraged and rewarded for delivering quality rather than needing above national weighted levels of investment in healthcare for the region. We have identified 20 recommendations to help enable and deliver the required further improvements and these are set out in the Enablers section. The overall picture in the North West is therefore mixed, starting from a low base but improving and with real examples of excellence across the region.

throughout the region. The final membership was chosen to reflect the range of clinical expertise, professions and geography within the North West. The group engaged with wider stakeholders through a series of events and processes outlined in the Appendix 1. NHS North West had already established a Mental Health Commission for the North West prior to the start of the Our NHS Our Future review. This group, together with the commission, have committed to and are working in close liaison and have complementary approaches to each groups activity. We quickly concluded that there were multiple potential pathways within and across these areas and in a report this size each would barely get a paragraph. We, therefore, focused on one specific pathway to allow us to demonstrate the system thoroughly and we chose dementia. Nationally, the mental health groups have worked collaboratively to ensure that their reports focus on a variety of pathways and these reports should be read alongside this one. In identifying the basic principles that the group would work to, it was considered that the current concepts of primary care, secondary care, social care third sector care, physical healthcare and mental healthcare could inhibit thinking on the way services are delivered. This could lead to the inappropriate use of time and resources rather than add value. As a result the report instead uses the following terms: Office based - Where service user visits the health or social care staff in the provider based office or clinic Outreach care - Where the staff member goes to see the person in their own home or in other setting away from the providers base or facilities 24 hour professional care - This may be through staff providing 24 hour continuous care in a persons home but currently, more typically, includes residential, and nursing home care and inpatient care, from short admissions to long term specialist settings such as forensic units The type of interventions offered and staff skills required will be based on stepped care approaches, so the commonest level will be generalist skills and most interactions will be successfully undertaken at this level. There will then be a range of steps (regardless of name/type of provider organisation) right through to at the most specialised level such as in a high secure forensic hospital. This supports and enhances a whole systems thinking and approach. Care pathways will be simpler for service users and carers to use and to move up or down the steps as their needs change. This will be more effective and efficient in reducing contacts with people who can not help and improving satisfaction by providing a clear understanding to all of what can be reasonably expected.

Introduction
The group looked in detail at mental health and well being in four key areas in the review: Older people People with learning disability People with substance misuse including alcohol misuse Working age adults We recognise that these areas are not mutually exclusive. In line with the approach being taken nationally, child and adolescent mental health (CAMHS) was reviewed by the childrens clinical pathway group. In collaboration with the other seven groups, multiple interface issues and cross cutting themes were identified and these will be expanded on later in the report. The group had 23 members nominated by organisations
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Good practice example Merseycare NHS Trusts criminal justice liaison team has produced protocols and care pathways for mental health collaboration with courts, police and probabtion services within court services. These include service level agreements and operational specifications to ensure effective access to mental health services.

The group explicitly recognised that simply designing services to react when people reach breakdown in their ability to function will not work into the future. The evidence is that this does not work well now. The demographic evidence is that rates of a range of mental health conditions will continue to rise if nothing different is done, not least because many conditions, especially depression and dementia, are more common as the population profile ages. The group identified four issues: Societal issues These include societys expectations for health and wellbeing and its response to changing age profiles with greater ethnic and cultural variation. There is considerable evidence that, as a society, we are becoming more risk averse. Increasingly, we are turning words describing normal healthy experiences such as stress, loss and distress into pathological terms, meaning they are seen as harmful or abnormal. It is important for everyone to be given the opportunity to develop emotional resilience and this requires exposure to the full range of human emotions. We all have strengths and weaknesses and we can learn to maximise our strengths in ways that do not diminish others. Ideally this is best learned in childhood, when support should be at its maximum and we have the greatest ability to learn. Risks are part of everyday life. Each person needs to learn what are the boundaries for them and this is best done with guidance and support, not as part of adult therapy, when things have already gone wrong. This will not prevent mental illness as causes of mental illness are varied, but it will reduce unnecessary additional risk factors and help people to be in a stronger position to cope with physical or mental health problems as they progress through life. Stigma and social exclusion towards those with mental health problems further compounds the problem. We recognise and agree that each individual needs to be responsible for maximising their own health and wellbeing, including their mental health, but everyone will need help to do this at some point in their lives. Access issues If a problem does arise, good access is not only about seeing someone quickly. All the evidence on early intervention shows that it is appropriate access to someone who can provide meaningful help that is the critical factor. Seeing the wrong person introduces delays, increases communication risks, increases the risk of the individual just giving up and increases the sense of the problem being too big. The person who can help does not have to be a specialist or even a health and social care staff member. Many people with early common mental health problems are best helped by support and advice from people they trust within their own social network. There is evidence that people with more severe mental health problems who are known to respond to early intervention are not being identified at the point where they seek help or when a problem becomes apparent. There is evidence that accessing help on prevention is difficult. Not least because advice on prevention changes and can seem contradictory. People with low self esteem, poor educational attainment, limited social networks, low cultural expectations or attitudes towards mental well being or poor English language skills are at highest risk of not getting access to clear prevention messages and someone who can help them to navigate the system.

Good practice example A project by Michele Bering, consultant nurse at Cheshire & Wirral Partnership NHS Foundation Trust, to improveing and supporting access to mainstream health and social care services in Cheshire and Wirral for people with learning disabililties was shortlisted by HSJ in the Reducing Health Inequality category. Her work, run in partnership with the three PCTs and two local authorities, also secured Health Foundation funding to extend the project to mental health Interface issues Mental health does not exist in isolation. We all have physical and mental health and the majority of people will have problems with their physical or mental health or both in the course of a lifetime. Having serious physical problems increases the risk of getting mental health problems and vice versa. Health, social and lifestyle problems interact in complex ways. Sometimes these issues require specialist intervention, but in many cases appropriate generalist interventions are better. Increased skills in mental health assessment and interventions or joint physical and psychological services working together in general services can successfully reduce reliance on specialist services.

Good practice example Ashton, Leigh & Wigan PCT provide cognitive behavioural therapy to patients with respiratory problems suffering with anxiety and depression. The respiratory nurse specialist, who has been trained to deliver CBT with clinical supervision, is able to integrate cognitive behavioural interventions into respiratory care packages. The aim is to enhance the quality of life of this group of patients and reduce the burden on general and specialist services.

Education, training and supervision issues Public education and training to promote positive mental health is important, but difficult to do if there are mixed messages. Training for health and social care staff and other frontline access points, including the emergency services, must recognise that people will present with problems in multiple settings despite systems wanting a single point of access. It is therefore essential that all people who work in such settings have enough generalist mental health training to identify, assist, intervene or signpost people to any further help they may need. New research and evidence changes best practice. Ongoing training appropriate to the persons role must be incorporated into their personal development plans. They must know what they can do, but also what their limitations are. Stepped care will involve many steps. It is crucial that service users and carers know what should be expected at any particular step and that the person they are seeing has the relevant, up to date skills, no matter which organisation they work for. More complex care may typically be provided by a team who work closely together and between them have the necessary up to date skills.

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Case for Change


Mental illness is common with one in six people having a treatable problem at any one time. According to the Audit Commission and others, approximately one in four GP consultations have a primary mental health component. Add to that the needs of people with learning disabilities and people with substance misuse, including alcohol, and it is apparent that the areas covered by the mental health clinical pathway group impact on all facets of life in North West hence there is no health without mental health. This section of the report looks at some of the issues facing us here in the North West, what needs to change and why. Profile of the North West The region covers 14,000 sq km Population of 6.8 million Four fifths of the region is rural, but most people live in the urban areas; 60% are in the two core conurbations of Greater Manchester and Merseyside Equivalent to Scotland or Sweden in terms of population and expenditure Academic attainment is poor compared to rest of the UK, with 3% more having no qualifications and nearly 3% less educated to degree level Those in full-time employment is nearly 2% less than the national average Health inequalities in the North West A child born in Manchester will have 10 years less to live than a child born in Kensington and Chelsea in London We have some of the worst binge drinking in England A third of children under 11 will be obese by 2010 We have the second highest rate for diabetes in England More people in the North West will die of alcohol-related illnesses than anywhere else in England We have the highest rate of deaths from smoking in England The percentage of people economically inactive because of disability or permanent sickness is 7.75% (8.24% in Cheshire and Merseyside) compared to 5.30% for England. This includes the second highest rate for incapacity benefit due to mental health and behavioural disorders 2% to 3% more people in the North West consider that their health is not good or have a limiting long term illness compared to the English average The North West comes in the worst performing two or three regions in terms of highest suicide and self injury rates in England Mental Health People with mental health, learning disability and substance misuse, including alcohol problems, are higher risk groups for premature death and long term health disabilities Without effective help and treatment these risks are increased. The quality of life through physical illness is known to be closely related to mental health problems. People with mental health problems are up to twice as likely to report experiencing a long term illness or disability; over two thirds of people with a persistent mental health problem also have a long term physical complaint. Levels of suicide and self harm remain unacceptably high. This creates additional
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distress and suffering for the service user, and staff. It also damages the whole North West economy and therefore impacts on every resident in the region. Mental health services across the North West, like services across the country, are patchy. There are some excellent examples of good service but these are not consistent across the region. Investment in services for people with mental health problems vary significantly. Compared to 152 PCTs nationally, those in the North West were ranked on expenditure as seen in the table below: Number of PCTs in top 20 nationally Mental health Substance misuse Dementia Other mental health Learning disability 1 2 1 1 1 Number of PCTs in bottom 20 nationally 6 3 4 7 2

Since the creation of the North West SHA in 2006/7 and the reconfiguration of PCTs there has been a conscious effort to address this with some signs of progress. However the current position still reflects the negative impact of the historic under investment. Without a coordinated effort, there is a risk that the North West will not bridge the gap and that avoidable long term suffering, premature death, emotional physical and financial losses and inequalities will persist compared to the rest of England. Commissioners putting more money into mental health will not in itself dramatically improve things. There is evidence of variation in the North West that is independent of levels of spending, with many examples of national and world class services, but also many that are below standard. There is considerable evidence on quality across specialist NHS provider trusts from the Healthcare Commission reports that allow benchmarking with the North West and nationally. This is a public source of data but there is little evidence of it being systematically analysed and used at regional or commissioning level. There is very little public benchmarking data on quality in primary care or third sector providers across the North West at present. This is a clear gap for commissioners, service users, carers and the public in understanding and being empowered to make decisions about use of resources. There is a paucity of outcome data available to the public about provider services. We will now look at the information that is available and what that tells us about current service provision. The NHS Here are some facts and figures about the NHS in the North West. The NHS spends over 11 billion a year on services in the region. This equates to 11% of the regions GDP and of this, just over 1.5 billion is spent on mental health services (12.1%), meaning the North West has the second lowest expenditure on mental health per head of population in England Nationally the percentage spent on mental health is 12.2% and in the North West 16 of the 24 PCTs fund at levels lower than the national average, with a range of 9.4% to 17%, through this may be due to lead purchasing roles

The North West spends 67% of investment on services provided by NHS organisations, compared to 77% in London, with the remainder spent predominantly with non statutory and social care providers There are 38 NHS trusts in the region. These are: 29 acute and specialist trusts Nine mental health trusts One ambulance service An increasing number are Foundation Trusts, including currently four mental health foundation trusts. There are 24 PCTs in the region and 42 local authorities, of which four are unitary authorities The NHS in the North West employs over 184,200 (152,200 fte) staff, of which more than 92,500 (78,800 fte) are professionally qualified clinical staff. For identified mental health/learning disability trusts there are 15,754 (15,141 fte) staff. In comparison to the rest of England the proportion of staff per 100,000 population (2005/06) is as follows: North West Medical 16.9 England England Average Highest 19 31.7

neighbourliness, all of which are known to contribute to mental wellbeing. For additional and more detailed information on the evidence for increased mental health need in the North West please see the appendices. Diversity The North West has a rich variety of cultures and traditions. The group is not in a position to determine what might be the specific local issues for individual communities across the North West as this would require more detailed local work. As noted previously, there are significant variations between urban and rural community settings, between and within the historical counties and the newer local authority boundaries. Diversity encompasses a wide range of views and value sets. Over time some stay unchanged, some change quickly, some slowly, so service provision needs to dynamically anticipate and respond to such variation. One aspect of diversity is in relation to black and minority ethnic communities and individuals. In particular, it remains a concern that some census groups are significantly over represented amongst those detained under the Mental Health Act 1983. Standardized data for the North West is not available in the Count Me In report published in December 2007 by the Healthcare Commission, but the data tables suggest that trends are similar to the national English pattern. National data show that: British white, Indian and Pakistani groups have below average number of people detained Black or black British groups have the highest rates of those detained. The highest detention rate is in the black Caribbean group The fastest growing group is the other white group Detention under the Mental Health Act is not and should not be the only diversity issue that needs addressing, but these figures are stark and commissioners and providers of services need to reflect on them.

The North West has the lowest proportion of consultants in England Nursing Clinical psychology 126.2 6.8 120.7 7.9 155.7 12.6

The North West had a high proportion of assistants compared to other regions Therapists 10.4 12.3 15.8 The North West stands out as having a low level of provision in view of its high need level Counsellors & psychotherapists 13.7 13.2 27.6

The North West has the second lowest proportion of psychotherapist/counselling psychotherapists in England It is estimated that there may be more than 9,000 professionally qualified staff working in non-NHS healthcare settings, including the third sector, of which mental health staff will make up a significant proportion. Large numbers of social care and other non healthcare workers support those with mental health problems and learning disabilities outside of the healthcare sector Key Indicators The following indicators were derived from the Indications of Public Health in the English Regions, 7: Mental Health, Association of Public Health Observatories (APHO), 2006 at www.apho.org.uk They show that North West has significant risk and protective factors and determinants. Unemployment is the third highest in England. The percentage of those with mental health problems in employment is 20%, compared with a national average of 24.7%, placing the North West second worst. The best is the South East where the figure is 33%. Information on other risk factors also place the North West amongst the worst performing in England. These include diet (consumption of five or more fruit or vegetables per day) where the region was ranked eigth and for recommended levels of physical activity at ninth. The north of England, including the North West, scored well in terms of social factors such as social support, social networks and
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What is Good Quality Care and What Prevents this Happening Now?
There is variability in the provision of mental health services across the North West region as well as excellent examples of good service, some of which are highlighted in this report, but which are not consistent across the region. We look at some of the reasons why. Barriers to good quality care include: Mental ill health still marginalised despite being a high financial as well as distress burden on society and individuals Insufficient good data/evidence to support decision making around health and social improvements A recognised under-development of joint mental health commissioning of health and social care across the whole system A lack of attention to service user satisfaction data and other service user outcome measures The need for investment in the current workforce to develop and meet the needs of future service models The need for efficient, effective and seamless care pathways including stepped care

Stigma and discrimination within society continue to prevent proper engagement in mental health and emotional wellbeing and promotion Underpinning this is the principle that mental health services provide safe, sound and supportive approaches which are person centered. The group has identified the following overall top three priorities as central to achieving quality of care: Equity of access Standards of care User and carer engagement in all aspects of pathway including defining outcomes Good practice example The Central Manchester primary care mental health team has been recognised nationally for its work in an area with profound social problems and with clients who have in addition suffered severe trauma, with serious consequences for their mental health. The team works to address the social as well as the health problems of their service users, and has established good links with the voluntary sector. It uses a stepped care service model that provides a framework for delivering mental health care based on complexity of need. In establishing this, the team placed emphasis on the value of remaining responsive to patients and has managed to avoid developing waiting lists by working closely with GPs who in turn have increased their commitment to providing enhanced in-house care for patients presenting with common mental health problems. Additionally, developing close working relationships with a number of voluntary and community sector services has enhanced the service in terms of responsiveness, quality of service provision and capacity to manage referrals. The group focused on four key areas and identified standards that would represent quality care, as shown below: People with learning disability Recognising the needs of those with learning disabilities across all services and ensuring equity of access

Older people Ensuring services are needs led and age appropriate, not age led Supporting the needs of both formal and informal carers to ensure a high quality of care Creating a wider knowledge of the mental health needs of older people alongside their physical needs, whilst recognising the interplay of these needs Working age adults Ensuring needs based services that meet the mental health and physical health needs of service users, appropriate to the severity of the need Recognising the need for mental health wellbeing and mental health promotion for the general population Ensuring equity of access through joined up services with clear ownership of pathways Good practice example Imagine, Mainstream Project, Liverpool, is a voluntary sector organisation that supports people with mental health problems to access mainstream provision rather than just mental health services. Each staff member (bridge builder) is responsible for making links with a particular sector and supporting clients in these areas. Sectors include education and training, employment, visual and performing arts, sports and leisure, volunteering, and faith, spirituality and cultural communities. Clients define their own support needs and aspirations, and the client and bridge builder identify possible opportunities to meet these in mainstream settings. Bridge builders offer dedicated tailored support to clients as they develop the confidence to use mainstream services an further develop social networks.

Clinical Pathway
The group has developed a generic clinical pathway that can support the multiple care pathways across the four areas. It has used dementia to illustrate this below: Example Model of Whole Population
at risk not in service becoming vulnerable preventative referral experiencing harm crisis referral nonresilient not in service

resilient

Ensuring the appropriateness of standards of care, with a clear definition of threshold for access to learning disability services and supported by a workforce across all services that is fit for purpose Ensuring equity of access to carer and family support and recognising the impact that caring has on people who may themselves be older adults People with substance misuse including alcohol misuse Giving consistent health messages, with a particular focus on young people and prevention Ensuring effective coordination between services, recognising the wide range of actual and potential partnerships Achieving joint working across all services (not just health) to reduce the risk of exclusion and ensure early and opportunistic interventions

fall through net

to resilient

maintained in service

making progress

nonresilient in service

In this case the term resilient is used rather then healthy as it describes the person as coping with the normal fluctuations of life, experiencing the full range of emotions from joy to distress, but without any significant additional risks over the normal for the whole population. A resilient person may still have underlying health issues, such a disability or long term condition.
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In the model the stopcocks currently turn in either direction, so the aim of pathway development would be to reduce flow to the non-resilient boxes and speed flow towards recovery through maintained in service to resilient. Too many referrals are still of the crisis referral type. Such referrals indicate a system failure and need review so that pathways overcome obstacles to effective access. There is a need to promote planned booked referrals that suit the individual and mean they access the best person or team to deliver assessment and effective evidence based help. The group considered clinical pathways for each of the key areas and will take these forward, but it was agreed to consider a single specific pathway in more detail, namely dementia. The pathway needs to consider interactions with other specific pathways, such as those related to intercurrent comorbidities, and onwards to other pathways, like those for end of life care. Under each step below, we give examples but do not itemise all of the possibilities that exist. In moving to implementation, the group recommends that for each step there will be links to dynamic evidence based interventions such as through NICE guidelines or tools such as Map of Medicine. Health promotion and prevention The person is resilient and the focus is to maintain that position while providing a framework for early recognition of symptoms. Memory should be part of general health promotion Make cognitive assessment part of routine health screening using tools such as 6-CIT and clock drawing Raise public awareness as part of mental health promotion Signpost to information and services Concomitant or predisposing factors including; hypertension, alcohol misuse, smoking, heart disease, diabetes, hypercholesterolemia and obesity must be managed Build up neuronal reserves through cognitive, physical, social and leisure activity

Suspected diagnosis of dementia Evidence suggestive of a diagnosis of dementia. People should access specialist assessment via clear, efficient and accessible local routes such as: Referral to older peoples liaison services for inpatients in acute general hospitals Direct referral to rapid access memory assessment clinic Memory clinic providing one stop holistic service with multi-disciplinary health and social care services If there is no confirmed diagnosis, refer back to first step with clear care plan and information including a firm date for reassessment. Confirmed diagnosis of dementia (low contact) Person may be able to return to resilience or be maintained in service. With patient (and carers where possible) develop a personal management plan that includes: Social, physiological and psychological care and treatment Named practitioner as primary contact (with identified deputy in case of absence) Minimum contact every six months Information and guidance, including planning for the future, and consideration of advanced directive if not already done at earlier step Support, information and guidance for carers/relatives Continue with low contact

Confirmed diagnosis (high contact) Person is non-resilient and is either within or outside of service, but with potential need for crisis intervention. Patient condition requires high contact with the aim being able to stay at home with support from specialist services and crisis intervention. The assessment of complex health, social and care needs should consider: : Risk to themselves or to others Increasing personal care needs Heightened carer needs Developing more intensive management plans

Problem presented - first access to services The person is vulnerable and at risk but not within specialist services. They may return to resilience or remain at risk of further problems or experiencing harm. Screen for preventable functional, organic or social causes Give accurate information and advice Promote positive self help and choice Refer to appropriate pathways, including next step as appropriate Carry out initial screening and assessment

Confirmed diagnosis (intensive contact). Person is non-resilient in service. They will need: 24 hour care, which may be delivered in the persons own home. May also be provided on a respite basis in other settings, such as residential/nursing home care or in acute hospital or mental health inpatient services Continuing specialist mental health support, but emphasis moves to generalist care

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Confirmed diagnosis (end of life care). Person is non-resilient in service. Their care should include: Liaison with specialist palliative care and end of life teams. Apply appropriate pathways Care guided by advanced directive, including role of advocates Support of carers, including bereavement care Estimates by a range of organisations including Age Concern, Alzheimer Disease Society and National Audit Office suggest up to half the people over 65 with dementia are never given a diagnosis and figures may be worse for the smaller numbers of people who develop dementia before the age of 65. This can be due to lack of public awareness, societal issues, poor awareness or training in detection amongst those to whom the problem may present, and they will present in many different settings not just in GP office. Other factors could include misguided paternalistic ideas about withholding a label or feeling hopeless so no point in giving diagnosis. Similar reasons were given for not diagnosing cancer some decades ago and are now thoroughly discredited in that field; they should be equally discredited in dementia. There may be perverse incentives not to make use a diagnosis as it can be used as a vehicle to exclude such as in the residential home sector. Early access at the right time to people with the right skills to identify the problem and begin advice, further assessment, interventions and support for the service user and carers is essential. This will be office based. We have seen some interesting examples from around the world of advice sheets created for staff who might be the first point of access, such as those in emergency services and local authorities so they can put the service user in touch with the right person to make an early diagnosis, and think this has merit. Once the person accesses the health and social care system it is essential that they are given up to date accurate information and the best up to date assessments and interventions are offered. Map of Medicine is being made electronically available to all clinicians with the North West SHA in 2008 and some group members looked to see how it could fit into the dementia care pathway. They concluded that it would be a clinical decision aid to assist within a care pathway rather than a care pathway itself. The advantage of this is that it links the person to current evidence at each step, including external sources such as NICE guidelines, and will be kept up to date. The disadvantage is that it currently only covers the evidence for some interventions and only part of the pathway. Dementia is one of many pathways considered within Map of Medicine, including many mental health related ones, but dementia is the only one the group had time to consider in depth. There is increasing evidence, such as the National Audit Office, that early diagnosis and early appropriate intervention can improve the quality of life for the individual concerned and overall reduce the burden of disability on the individual, the family, the carers and society. It is essential that such services are available and further expanded to cope with the anticipated growth in cases of dementia. The human, societal and financial costs are already high, but will increase further if effective action is not taken. Most people with dementia and most carers wish for them to remain in their own homes and maintain an independent lifestyle for as long as possible. Office based and outreach
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services should therefore be geared to support these choices. Interventions should be proportionate and evidence based on a stepped care model. Such interventions will involve a mixture of physical, psychological and social approaches. Access to all types of intervention should be based on need and should not involve exclusion by diagnosis. In other words many people with dementia will have other physical health problems and services should treat the whole person according to their needs. Frontline staff such as modern community matrons need the skills to deal with people who have dementia alongside their physical health problems. For many but not all people with dementia, there will come a time or times when they need some form of residential 24 hour care either on temporary or long term basis. There should be a range of available stepped care types of residential facility addressing need without perverse incentives and without exclusion based purely on diagnostic category. Current differential payment schemes based on either, health or social care are a major issue in creating barriers to effective care delivery. People with dementia have a variable prognosis, but increasing evidence is that living for 10 to 20 years with dementia is not unusual. This necessitates effective care systems that are responsive to changes in need and are capable of supporting the person with dementia and their carers. Systems must review that changing need and provide effective appropriate advice and interventions. These systems must also support and address the needs of carers and be responsive to changes in their needs. It is a fact that eventually all people die, including those people with dementia. Current estimates are that around 12% of deaths in England occur in people with dementia (but not necessarily due directly to the dementia). This figure will rise as life expectancy rises, leading to an increasing prevalence of dementia. Planning for end of life by individuals and their families is therefore important, including the use of advance directives before dementia removes the persons capacity to make decisions. Those planning or delivering end of life services need to ensure that they are sensitive to the needs of people with dementia and their carers and that no barriers based purely on diagnosis are created in accessing such services.

Implications for Delivery Models


In looking at the pathways for the key work areas, the group identified some of the main issues that will impact on service delivery: People have needs that require services to deliver social, mental health and physical advice and interventions Risk groups - those people identified as vulnerable, those people who fall outside of mainstream services and those people with needs, who choose not to, or find it difficult to access services The need to support people to look after their own mental health wellbeing through upstream prevention and health promotion The need for early and rapid diagnosis/formulation for those with a disorder and normalisation away from health/social care for those without a disorder Smooth transfer across stepped care as needed Removing unnecessary steps such as referring on to services or practitioners who add no value Recovery focus based on pragmatic understanding of best potential outcomes Requires appropriate up to date skills at each point of

access and at each step The need for service user involvement in decision making and defining outcomes What is also evident is that the point of access for mental health can be broader than just healthcare, with people presenting to a wide range of professionals and services. This will often be in office based settings or in 24 hour care settings including medical/surgical wards or local authority and third sector services but may also be to emergency outreach services such as paramedics, police, fire services. Ideally initial care, especially of early cognitive impairment, will be office based to enhance normality and mainstream access. With a progressive condition such as dementia, more complex care packages with increasing proportion of outreach interventions will be required over time. Currently, a high proportion of people move from intensive home based care to 24 hour care either on a temporary basis such as respite, or on a permanent basis. The overall aim of a care pathway would be to effectively support service user and carers to keep the service user at home. In a good care pathway, the decision to transfer someone to 24 hour care would not be driven by lack of adequate community resources.

Implications for Enablers


The group has set out in the main body of the report and the appendices the rationale for change and given a worked example of a mental health care pathway. The great variation still existing in the North West and between the North West and the majority of England in terms of need and effective inputs has also been noted and the higher than average level of poor outcomes and outcome proxy indicators have been highlighted. The report has covered good examples supported and underpinned by evidence that shows the North West can be innovative and deliver high quality. This section sets out these key enablers that will be needed to improve overall mental health and well being in the North West over the coming years and, in turn, the key recommendations. Quality Without a clear and explicit focus on quality, the overall North West picture will not substantially improve. Key indicators for quality are outcome measures that have the engagement and confidence of service users, carers, staff and the public. There are very few of these at present, but we believe that one test of world class commissioning will be the delivery of such agreed outcomes. In the short term we believe that there are a large number of proxy measures that can help to determine quality. These include but are not limited to data on predicted need versus identified need. We recommend: World class commissioning in mental health requires commissioners to use existing data to establish current levels of need and any gap between predicted need and service delivery and publish this data annually This data becomes a key part of benchmarking of commissioning There is investment in developing outcome indicators and in developing ways of publishing outcome data to empower service users, carers and the public as well as to assist commissioners and providers in further improving services Information In addition our work has demonstrated that whilst much information on mental health is collected, little is readily available in usable, benchmarked, accessible and publicised formats. It is a paradox that at a time when service providers and commissioners are frustrated by the amount of time diverted from clinical service delivery to form filling, there was such difficulty in obtaining information on quality, need and delivery. As noted in the main body of the report, for some sectors there was virtually no accessible data on quality at all. We further recommend: To achieve world class commissioning that benchmarked information should be made available on quality and value for money for all provider contracts, regardless of sector, and that health and social care commissioners develop such data sets and publish them jointly The development of mental health information systems that support clinical pathway service delivery and intelligent analysis of data to underpin transparent and equitable commissioning decisions should be a priority for the North West
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Good practice example There are many examples of good practice in relation to public mental health and wellbeing, these include: Improving the mental health of people with a physical health problem, long term condition or disability, as seen in Manchester PCT Combating stigma and discrimination, especially amongst young people, workplaces and the media, as seen in St Helens and Halton PCT Support to employment for people with existing mental health problems through individual placement support, and for those in existing employment with mental health problems through vocational advice in primary care and the workplace, as seen in Bury and East Lancashire PCTs Stepped care within primary care need increased investment in steps 1 and 2 for upstream prevention, especially in non-pharmacological interventions. Examples of this are social interventions through social prescribing schemes on the Fylde coast/Blackpool, Sefton, Stockport and increased access to psychological therapies in Salford. This is being rolled out through increased investment; but attention needs to be paid to addressing health inequalities Suicide prevention within secondary mental health services. This is increasingly significant amongst providers of services to older people across the system, especially primary care and also requires local partnerships across sectors. A good example is the Greater Manchester Suicide Prevention partnership, Greater Manchester West Mental Health Foundation NHS Trust For more information visit http//www.northwest.csip.org.uk/work/mental-healthand-social-wellbeing/mental-health-promotion.html

Incentives In common with the other regions in England, we have identified that the lack of an agreed contracting currency is a major gap. We recognise that payment by results in the physical health sector has its limitations, but it gives commissioners and providers a set of benchmarks against which to set contracts. We believe that quality and outcomes for people with mental health problems in the North West will only significantly improve if providers are rewarded and incentivised to deliver quality and value for money rather than lowest cost. We recommend: The North West campaigns for a currency and tariff system for mental health in England that supports care pathways through a stepped care approach, incentivises quality and promotes meaningful outcomes for service users through a recovery focus In mental health services, as in any aspect of life, things can go wrong. We endorse the findings of the National Patient Safety Agency and others that say organisations that encourage the reporting of errors and incidents are the safest and most likely to promote good quality by having a low threshold for action and enhanced learning. It is therefore important that any contract system does not create any perverse incentives such as reduced incident reporting Commissioners ensure in contracts that all providers are adhering to incident reporting systems and proactively learning, proportionate to the types of service they provide not the nature of the employing organisation That if a contract provider is not reporting quality, including incidents, or is showing persistent and serious quality issues on external benchmarking, then commissioners would be required to explain to the public the reason for continuing the contract with that provider Innovation The group came across many examples of innovation during its work. Some examples of particular projects are listed in the main body and appendices. Many of these are about service redesign to deliver services better such as early intervention in psychoses and other such services. Mental health services are correctly seen as generally low technology with a large emphasis on face to face delivery of services. This appears to have created a perception that technological innovation is not relevant to mental health. In fact, mental health service commissioning and provision requires accurate timely and extensive information. There is clear evidence that increased use of technology, such as 24 hour access to electronic care plans and clinical information on a need to know basis, has improved decision making especially in emergency or transfer situations. There is evidence that systems such as electronic prescribing, electronic clinical decision support advice, text message reminders of treatment appointments, some forms of electronic information sharing including some public health messages, like those on suicide prevention and some forms of electronic therapy are improving efficiency, effectiveness and safety. It appeared to the group that such initiatives and regional coordination of innovation in mental health are currently fragmented and patchy, with too little being made of the opportunities that exist and the complexity acting as a perverse incentive against promoting innovation. We further recommend:
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The North West invests in a system to support, collate and disseminate best practice in mental health innovation including those using improved technology, and that this system has access and/or influence on research and development within the region so that innovators are rewarded and encouraged for adding quality and value. Workforce We have also noted that most mental healthcare now and in the foreseeable future will involve significant face to face contact. We have noted that at present too many contacts take place with people without the skills and up to date training to deliver the most effective service and have illustrated this in our dementia pathway example. We recommend: Commissioners evaluate from their published predicted mental health work, as it develops, including what levels of mental health need will present or be a significant co-morbidity factor in which pathways. They must ensure that providers offering those pathways or parts of them have staff with evidenced relevant skills that are maintained and up to date proportionate to the level and type of mental health need they will encounter There must be a mixture of some general skills for all frontline practitioners, but with a stepped care approach to more specialised needs, including access to appropriate specialists. For example access to an appropriate level of liaison psychiatry services would back up the generalist knowledge of clinical staff working in an acute physical health care provider service Commissioners, providers and regulators work together to ensure that contracts encourage high quality staff into mental health commissioning and provision, reduce the risks of burnout and harm to staff, support them in developing and maintaining skills to deliver improved outcomes and reduce the stigma on mental health by promoting the field as an important career choice for the long term well being of the country Training and continuing professional development are driven by service design based on effective care pathways to address local need, rather than existing skill sets driving service design Accountability Promoting and maintaining mental health and wellbeing requires whole community approaches and cannot simply be left to health and social care organisations. It is important that within local communities there is joint accountability between health and social care for identifying the mental health needs of that community, including elected leaders and representatives, in promoting mental health and well being. In particular, it is important that these reports identify areas or groups with high need, such as the examples in the dementia pathway, and identify what will be done to address this. Examples include, but are not limited to, estates in urban areas with high socio-economic deprivation, isolated rural communities without good public transport. It is important that health and social care commissioners jointly work to support and promote the development of care pathways based on local need and that they are explicit about what they are commissioning, including expected outcomes and how these are determined. We recommend:

Locally accountable structures and organisations, including local authorities, should ensure that community initiatives such as Local Area Agreements demonstrate active commitment to improving mental health and well being in the local communities Local and national regulators and regulatory reports apply the same quality and governance standards to services based on service being delivered, not the type or sector of provider providing those services The good work already underway to promote service user and carer involvement is further developed as part of accountability structures, including helping commissioners and providers to develop meaningful measures for outcomes Accountability for addressing discrimination specifically includes accountable bodies demonstrating action against stigma towards those with mental health problems Leadership within organisations We found that there are many good examples of leadership within and across organisations, but this was patchy and can be strengthened. We recommend: Strategic leadership across health and social care should be strengthened as it is critical for joint commissioning of mental health services Management systems in health and social care commissioning and provider organisations must value, promote and encourage input from those with clinical, as well as non-clinical, expertise and backgrounds Service user and carer inputs and representation must be embedded in key decision making groups within health and social care commissioners and organisations, including recruitment at all levels, service design and delivery and the development of outcome measures

Conclusion
In conclusion, we believe that there are significant opportunities within the North West to turn it from one of the worst performing regions for mental health to be amongst the best. There is skill, commitment, quality and innovation within the North West, but it is currently patchy, fragmented and has difficulty in attracting support to develop and share success. We recognise that the North West SHA, through this group and the mental health commission, has clearly indicated a desire to learn and advance Mental Health Commission and delivery within the region. We welcome the North West and national commitment to the clinical pathway groups and believe they will go forward as a critical component of the implementation phase of the review. The implementation phase, if properly supported, can deliver effective and efficient care pathways to promote and maintain mental health and wellbeing in the North West.

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Appendix 1
Clinical Pathway Groups Meetings and Engagement Events The clinical pathway group met on five occasions, the first time on October 30, 2007 and the final meeting for this stage was held on February 12, 2008 Attendance at meetings averaged at 60% of membership. Members also engaged others through their organisational and professional networks. Other engagement events included: Two national deliberative events, September and January, with 240 patients, public and staff 12 focus groups with patients, public and staff, using the Picker Institute, exploring their experience and understanding of the NHS Engaging with more than 30 patient and public involvement leads from across the region in October Engaging with clinical leaders and networks through a clinical congress attended by over 300 clinicians from across the region in November Engaging with over 100 NHS stakeholders from local authorities and social services, voluntary sector and independent sector in December Conducting a regional staff stakeholder event in January, engaging with over 200 NHS staff from across all NHS organisations in the North West

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Appendix 2
Supporting Evidence/Good Practice Examples The following are additional examples of good practice in the North West that have been made known to the group. These are not meant to reflect the full range of good practice that is occurring in the region, but simply to share those which became known to the group. The group has heard anecdotally about multiple other examples, but has found it difficult to check and collate these within the time and resources available. One of the groups recommendations for enablers is the need to have a regional website for collating and disseminating best practice examples. We hope that these examples will encourage others to come forward and share best practice examples

5 Boroughs Partnership NHS Trust The trust has developed a strategic outline case for antenatal and perinatal mental health services for up to one year after birth, in line with NICE guidance. This includes a vision for parental mental health services, for parents with mental health issues and complex needs, to support them and their children, including services to support the primary relationship between the parent and child, up to two years of age. Greater Manchester West Mental Health NHS Foundation Trust The trust has a developed a trust wide psychosocial interventions strategy linked to its adult forensic mental health services Creation of nurse led physical healthcare team on the inpatient unit to improve is working to enhance the standards of physical healthcare in collaboration with the mental heath teams. The trust has published an user led recovery model, used in education of junior doctors and in early intervention services training. The EDIT, early detection team evolved out of EDIE research trial. The local team has led on a national report regarding early detection view it at www.earlydetection.csip.org.uk. The service won the North West (Trusttech) award for innovation info service improvements. Central Manchester and Manchester Childrens University Hospitals NHS Trust The Manchester specialist midwifery service specialises in providing a service to women and their families where drug and alcohol use is problematic. It supports and co-ordinates the care for HIV positive women identified through the HIV antenatal screening programme. It also includes women in prison settings. The service includes all aspects of a vulnerable and socially excluded lifestyle. This involves collaboration across a wide range of statutory and voluntary agencies to address issues such as mental health, domestic violence, sexual abuse, prostitution and HIV. The combined expertise within the service is key to co-ordinating and developing the responses of other agencies and in supporting the longer term needs of drug-using parents and their children. Cheshire & Wirral Partnership NHS Foundation Trust The Wirral drugs service achieved one of the best scores in England in Healthcare Commission reports. The service is a good example of co-operation involving Cheshire and Wirral Partnership Trust, the PCT and acute hospital engages people with substance misuse problems in their overall healthcare, both physical and mental wellbeing, through joint teams. Cheshire and Wirral eating disorder services offers comprehensive services to children, through to adolescents, adults and older people, that are compliant with NICE guidelines and evaluated on ongoing basis. Outcome collaborative work including Wirral Assertive Outreach team Enhancing the healing environment projects, including those with service users and staff to promote and enhance therapeutic design into buildings Bowmere hospital, designed with input at all stages from service users, carers and staff, is highly praised as an example of how to create a modern therapeutic inpatient environment. The wards were praised in Star wards and AIMs national reports East/Central Cheshire PCT The PCT has produced a range of audit, pathways and guidance. These include: Cheshire based books on prescription Audit of dual diagnosis inpatient pathway 2007 Lancashire Care NHS Trust The trust has introduced a number of initiatives: Pathways to specialist mental health services for older people with dementia and depression In the Lancaster & Morecambe area Lancashire early intervention service operational policy 2007 Protected therapeutic time - implementation of daily protected therapeutic time on the psychiatric intensive care wards at Blackburn & Burnley Guild Lodge secure services, integrated care pathway user manual East Lancashire health economy are now using the ecpa
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Manchester PCT The PCT has worked with clinicians and other stakeholders to agree and implement a wide range of guidance, pathways and other initiatives. These include: Brief guide to stepped care for common mental health problems North Manchester primary care mental health team, October 2007, including alcohol factfile Using simulation modelling to support strategy development in mental health Symmetric model of mental health services in Manchester, psychosis map Referral form - primary care mental health team (PCMHT), Referral into primary care mental health services: Join the Debate Single point of entry model for all referrals to primary mental health care South Manchester Mental Health liaison meeting: an introduction to PBC Criteria guidance for CMHT Brief guide to stepped care for common mental health problems Discussion paper: primary care led mental health service development Revised version 2007 South Manchester computerised CBT project Perception of Manchester services for anxiety and depression as they are now 2006 Central Manchester primary care mental health team annual report Summary of Manchester supporting health programme, PBC pathways Manchester depression pathway The PCT has also developed protocols in the following areas: Psychological therapies Depression Drug problems Postnatal depression Schizophrenia Anxiety disorders Dementia and memory problems Depression in older people Roles of GPSI in primary care mental health The PCT has also developed protocols in the following areas: Psychological therapies Depression Drug problems Postnatal depression Schizophrenia Anxiety disorders Dementia and memory problems Depression in older people An audit summary that has started to benchmark key outcomes in this service from audits over the last two and a half years, including waiting times, take-up rates, DNA rates, planned ending rates and so on Stepped care service model, and clinical activity data for the period 2005-2006, PCT annual report Merseycare NHS Trust Liaison mental health services for older people in the acute trust to provide effective cross sector and cross agency working to support older people with mental health problems The Merseycare NHS criminal justice liaison team have produced a range of protocols in partnership with the police, probation service, courts and criminal justice system. These include: Protocol and care pathway for mental healthcare within court services. January 2007 Protocol and pathway for mental healthcare, draft October 2007 Operational specification and protocol for criminal justice mental health liaison Team (CJLT), October 2007 Police custody suites service level agreement

St Helens and Knowsley PCT The development of brief Interventions for alcohol in primary care. A list of additional evidence and other supporting material can be found on the NHS North West website at www.northwest.nhs.uk

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Appendix 3
Cross Cutting Themes The group was particularly interested in identifying themes and issues relating to mental health that impact on other clinical pathway groups. The group and the other pathway groups identified the following cross cutting themes, which are largely indicative but do demonstrate the way in which mental health impacts across a wide range of services: Birth Maternal and post natal depression Perinatal mental health and the support of the mentally ill women through pregnancy and birth Pre-conception support Training for midwifes in mental health assessment Referral routes/pathways to access mental health services The role of mother and baby mental health units Mental Capacity issues and birth Substance misuse Perceived high use of medication rather than other interventions such as psychological therapies Children As previously indicated the childrens pathway group was responsible for reviewing CAMHS and for both pathway groups the key issue was improving the transition between CAMHS and adult services. Other issues identified were: Supporting the mental health needs of parents including those with moderate and severe mental health problems Substance misuse Self harm including consistent access to eating disorder services Stigma & mental health well being, emotional resilience and tackling risk aversion Children as carers of those with mental health problems Parenting Abuse and managing abusive behaviours Impact of entry to the juvenile criminal justice system, conduct disorder and personality disorder to adult mental health Staying healthy Substance misuse, particularly the need for consistent messages about risk for mental health/learning disability higher risk populations Cultural issues and diversity Societal issues and the impact of issues such as deprivation, homelessness and worklessness Health promotion for those with mental health problems including obesity, smoking and sexual health Employer/corporate support for health Long-term conditions Effective mental health interventions to prevent /reduce co-morbidity Role of staff in long term conditions in assessing and delivering psychological therapies and other interventions Need for effective liaison services with mental health teams and clearer pathways Impact of dementia The level and impact of somatisation disorders in those with long term conditions Mental health impact on carers Difficulty bin accessing services for mild to moderate mental health problems for those with long term conditions Meaningful activities including work roles Planned care Access to screening for those with mental health problems Mental health/learning disability team input to help mainstream physical healthcare Identifying links between non-attendance and mental health problems Liaison including joint clinics Equity of access to gender realignment services Physical and mental health impact of medication Informed consent issues Equity of access and pro-active reduction of barriers to people with mental health/learning disability problems Liaison between services central to support the 30-40% who have mental health problems Urgent/unplanned care Strengthen liaison services, multi-agency working and information sharing Support for physical care in mental health settings Deliberate self injury/harm Substance misuse Risk of medicalising normal emotional reactions Role of ambulance/paramedics in sharing care The level and impact of somatisation Care for those with mental health problems and learning disability in acute setting and the extension of the skills base for acute care staff The impact of somatisation disorders Dental health needs of those with mental health problems and learning disability End of life Effective interventions for mental health co-morbidity, effective liaison Access to psychological therapies Mental health/learning disability teams helping support mainstream access including to mainstream palliative care Normalising and openness about death Training and skills on end of life care in mental health settings and in mental health for those in end of life teams Staff/carer support

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Comprehensive palliative care provision, for example dementia Dementia including recognition at younger age, for example learning disability, alcohol related early onset dementia Impact of Mental Capacity Act Openness and honesty in giving diagnosis of dementia Managing risk of suicide in bereavement pathway

Appendix 4
Key Determinates for Mental Health in the North West NORTH WEST ENGLAND ENGLAND HIGHEST 396.1 NW RANKING (out of 10) 9

Mental health and behavioural disorders incapacity benefit claimant rate per 100,000 (2004/05) % of adults with a limiting long term illness (2001)

388.1

262.6

20.7

17.9 26.8

22.7 34.1

9 9

Five alcohol consumption above sensible daily limits 33.1 (2005)

The population health statistics show the North West was again amongst the worst performing in England, with again the North East being the only region with a worse performance. Examples include: NORTH WEST ENGLAND ENGLAND HIGHEST 17.5 20.4 NW RANKING

% of adults with a GHQ score of four or more (2004) Mortality rates (age-stand) for suicide and injury undetermined (2003-05) - Male Mortality rates (age-stand) for suicide and injury undetermined (2003-05) - Female Self harm hospital admission rates (age stand) per 100,000 (2004)

14.2 18.5

13.2 16.4

8 9

5.6

5.4

6.4

176.6

142.4

251.2

The North West had the highest levels of hospital admission for schizophrenia, anxiety and depression, despite scoring above the national average in the percentage of LITs self assessed as green for having a mental health promotion lead officer (69%) and a mental health promotion strategy (41.1%). In terms of patient experiences, the percentage of complaints referred back to North West Trusts was below the national average at 37.7%. In the Healthcare Commission patient survey 2007, the percentage of mental health respondents who rated their care as good, very good or excellent was the highest in England at 82.3%. Similarly the same survey showed the North West had the highest ranking for respondents having at least one care review and having access to an out of hours contact number. This suggests that despite the high demand mental services, we do generally provide high quality of care For more information please go the Association of Public Health Observatories website at www.apho.org.uk

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Appendix 5
Membership of Clinical Pathway Group NAME Deborah Bullock Jacqui Bussin Margaret Campbell Miranda Conway Sandra Critcher Julie Cullen Ian Davidson Chair Ripu Deo Ceri Dornan Deputy Chair Mike Doyle Moya Duffy David Fearnley Jean Jenkins Graham Jowett Faye Macrory Debbie Nixon Tom Pickup Laura Pogue Neil McLauchlan SHA Facilitator Melanie Sirotkin Jeff Warburton Karen Wilson Liz Woodings DESIGNATION Paramedic, Head of Clinical Safety Consultant - Care of the Elderly Assoc Medical Director Consultant Psychiatrist Professional Lead OT Project Director Consultant Psychiatrist MH Consultant Psychiatrist GP Nurse Consultant in clinical risk GP (BMA) Medical Dir/Deputy CE GP - Winsford Director of Corporate Strategy Consultant Midwife Director of MH services MH Team leader GPwSI in MH Assistant Director for Education & Commissioning Director Public Health Service Mgr, Nurse Rep Exec Dir of Nursing & Care Community Mental Health Nurse ORGANISATION North West Ambulance Service St Helens & Knowsley Hospitals NHS Trust Bolton, Salford & Trafford Mental Health NHS Trust 5 Boroughs Partnership NHS Trust Manchester Mental Health & Social Care NHS Trust North West Mental Health Commission Cheshire & Wirral Partnership NHS Trust Lancashire Care NHS Trust Manchester PCT Bolton, Salford & Trafford Mental Health NHS Trust Liverpool PCT Mersey Care NHS Trust Central & Eastern Cheshire PCT Calderstones NHS Trust Central Manchester & Manchester Childrens University Hospitals NHS Trust Liverpool PCT Manchester PCT Halton & St Helens PCT NHS North West Tameside & Glossop PCT Lancashire Care NHS Trust Mersey Care NHS Trust Heywood, Middleton & Rochdale PCT

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our NHS

our future

Long Term Conditions Clinical Pathway Group

There are many examples of excellent, innovative, integrated and holisitc care for people in the northwest

EXECUTIVE SUMMARY

For the aspiration of the review to deliver the move of the NHS from good to great, much has to change. The approach should be bold and visionary, and not just tinker around the edges of a system that struggles to deliver for people with long term conditions.
A whole system approach is required, working across not just health systems but social care, education and employment, with meaningful involvement of the voluntary and private sectors, enabled through the greater use of technology. There are many examples of excellent innovative, integrated and holistic care for people in the North West and throughout the NHS, putting best evidence into practice and improving the lives of people with long term conditions. Clinicians need support to implement change, and to learn from others so that best practice can become the consistent norm for all. The NHS spends in excess of 11 billion per annum in the North West, yet despite this has some of the worst health in England. It is the second worst region in England for life expectancy. Outline recommendations from the group are given below and are described in more detail in the main body of the report: Personalise care and put the person with the long term condition and/or their carers "in charge"
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A generic patient pathway with a greater focus on self care and recognising the inter-relationships between diseases A collaborative care plan as the central component to all care, a true collaboration between the person with a long term condition, family, and professional carers Virtual care campus - care should be focused around general practice/primary care, and incorporate all the skills and expertise that the person with a long term condition and their family require Skills and roles - the role of the advocate and care coordinator in the care team is seen as key, with the need to redefine roles within the care campus The development of the care passport, using the patients own health record and care plan The concept of personalised budgets should be developed for healthcare based on need and the current social care models, with indicative budgets at patient level Population stratification for risk of disease, morbidity,

hospitalisation and so on should underpin all strategies for improving health outcomes and care pathways NHS organisations need to have mechanisms to invest in long term prevention and broader outcomes of care The health system needs to deliver solutions to overcome: Differing professional and organisational cultures Organisational barriers The need to develop further skills and capacity and financial barriers The feasibility of the proposed solutions will be developed over the coming months as part of this on-going work on clinical engagement and will be assessed through scenario planning exercises that will test out the assumptions and new models of care.

Introduction
For the aspiration of the review to deliver the move of the NHS from good to great, much has to change. The approach should be bold and visionary, and not just tinker around the edges of a system that struggles to deliver for people with long term conditions. The emerging findings from the pathway groups have been discussed and considered widely, through focus groups, public deliberative events, stakeholder and staff engagement events and comments from these are referred to throughout the report. A greater focus on both personalised care and population based targeted prevention of developing conditions, was the over-riding theme from the discussions and comments provided to the group, and these are considered in detail within the report. This clinical area covers a wide range of conditions, and many people have more than one long term condition, so the group decided to describe a generic patient pathway with common principles, with case studies drawn from specific disease areas. Numerous areas of excellent practice are seen in the NHS, some of which are highlighted in the case studies, but it is clear these remain in pockets and are not consistent across the care continuum or across the whole NHS and social care landscape. Feedback from stakeholders and patients is that the system could be much improved to meet personal and population needs. Participants at the deliberative event 1 supported: A greater focus on prevention of illness and earlier identification of problems, enabling people to stay healthy within their condition Personalisation and tailoring of services to the individual More involvement of the family and carers Clear and consistent pathways for people with specific conditions Better sharing of information between teams, departments and services and more joint working Choice about where to have care and more community services Continuity of care, including having a dedicated key worker for each patient Patients being given more information about their care and more support afterwards The stakeholder group wished the NHS to recognise the contribution, opportunities and benefits of partnership working, particularly with the voluntary sector and community groups in the field of long term conditions, including patient support groups. she (the patient) could be directed to a support group. To speak to others with the condition 2

Foreword
Over 1.5 million people in the North West are living with a long term condition and this number is increasing every year. Defined by the Department of Health as a condition that cannot at present be cured but can be controlled by medication and other therapies, long term conditions are usually complex, sometimes unpredictable and can affect most, if not all aspects of a persons life. A group of clinicians from health and social care came together in the North West to produce this report. Every member of the group was passionate about the need to improve services for people with long term conditions, to have a greater focus on prevention and early detection, to promote person centred services that fully involve people with long term conditions and their carers, and to provide people with more information to allow them to be in control of their condition. The group researched best practice both nationally and locally, to demonstrate how services could be improved and examples are included in the report. Many professional bodies, voluntary organisations and pressure groups described issues from the perspective of one or other long term condition, for example, asthma, motor neurone disease, diabetes, and so on. The group reviewed this evidence, but decided that there were common challenges across all long term conditions and the greatest impact could be made by taking a generic approach. People with long term conditions are more likely to be socially isolated, unemployed, live on low incomes and experience difficulties with accessing basic services. To move a service for long term conditions from good to great means that we have to place the person at the centre, deliver a personalised care plan, personalised budgets and care without boundaries. A whole system approach is needed, to work across not just health and social are but education, employment, the voluntary and private sectors, and enabled through the greater use of technology. Only then can we help people to live a full and productive life with their long term condition.

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Case for Change


In the North West we are living longer. Life expectancy for males has improved by 1.8 years to 75.4 and for females by 1.3 yrs to 79.9 in the period 1999 to 2005, but we are not living better. Here are some statistics to show the scale of the problem: Seventh worst region for low income 16% of people are on benefits Over one quarter of children live in poverty 23% of adults are binge drinkers Over six out of 10 adults are overweight or obese Only 11% of adults are physically active Highest level of drug misuse in England Highest level of long term mental health problems in England Inequalities begin from birth and although we are making progress, the North West is trailing behind as the second worst region in England for life expectancy. Across England, there are over 15 million people with a long term condition, of which 1.5 million live in the North West and the number is increasing. It is expected that the prevalence of long term conditions will increase over the next 20 years to affect nearly three million people in the region. Not only is this a result of greater morbidity from lifestyle pressures of obesity, alcohol consumption, and an aging population, but also as we improve survival from previously life threatening conditions. Treatments for cancer, HIV, neurological disease and vascular disease mean we are moving to pro-actively managing these as chronic conditions rather than curing. Patients with long term conditions pose a unique challenge to the healthcare system, as they often have the most complex conditions with multiple co-morbidities. Fig 1. Prevalence of long term conditions (unadjusted) CONDITION NUMBER OF CASES RECORDED
(Source: QOF data, June 2007)

Framework is quite striking. This highlights the challenges in using information technology to best effect at grass roots level. Without improvements in these areas the NHS will not be able to deliver targeted screening. The chart below shows the wide variance in the prevalence of kidney disease recorded in QOF data from one PCT: Fig 2: Chronic Kidney Disease - QOF Prevalence & Age Specific Prevalence Aged 18+ 2006/7 By General Practice

National Practice Code

The policy framework for the case for change already exists, including National Service Frameworks, Our Health, Our Care, Our Say, and so on. However they have not been implemented consistently, and so the patient benefits have not been fully realised. The group believes there are major barriers within the current health and social care structures and communities that are preventing the systematic implementation of best practice. The following barriers are discussed in greater detail within the report. Differing professional and organisational cultures Organisational barriers The need to develop further skills and capacity Financial barriers These barriers have been exacerbated by NHS priorities and investments which the group feels have focused on short term targets, and have been largely related to access and finance. For example the measures and targets for active case management have been numbers and have focused on prevention of hospital admission, rather than enabling people to live well with their long term conditions. In addition pump priming and double running of services prior to pathway reform has been resisted on resource grounds. The reluctance of NHS organisations to invest in more long term gains and to focus on broader outcomes of care needs to change. There are many examples of excellent innovative, integrated and holistic care for people in the North West and throughout the NHS, which put best evidence into practice and improve the lives of people with long term conditions. These tend to have been achieved only when highly driven clinicians have ignored or overcome current boundaries and barriers, and have been supported by brave and visionary managers. People with long term conditions need clinicians and managers to share their vision, of care without boundaries that will enable them to live well. The NHS must develop systems that focus on the patient and family, not on organisations or health professionals. These systems must enable the sharing of good practice, and the way that this has been put into practice. Clinicians need support to
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Asthma Atrial fibrillation Cancer Coronary heart disease Chronic obstructive pulmonary disease Diabetes Epilepsy Heart failure Hypertension Hypothyroidism Kidney disease Stroke and transient ischaemic attack

437,245 96,070 66,265 311,011 137,260 279,253 49,296 62,731 929,658 182,884 173,053 130,803

Within vascular diseases peripheral vascular disease, diabetes, coronary heart disease, stroke and hypertension there is enormous overlap. Take for instance chronic kidney disease 85% of people with recognised kidney disease have hypertension, 30% have diabetes, and 30% other vascular diseases. However the huge variation in recording by practices of disease prevalence through the Quality and Outcomes

implement change, and to learn from others so that best practice can become the consistent norm for all. The current delay of 17 years from research evidence to wide scale implementation 3 must stop. There is a need for systems that can adapt quickly to changing need and demand, where clinicians are empowered to innovate, patient values are paramount, and the quality of care and outcomes is transparent.

Recommendation The focus needs to be on personalising care, putting the person with the long term condition and/or their carers in charge enabling them to live well. The need for further development of skills as health educators within long term condition management should be considered, as all healthcare professionals do not necessarily have the skills to provide this support to patients. A person centred approach considering not just their clinical needs, but their social and family circumstances, was endorsed by the reviews stakeholders group in its report. However, concerns were expressed at the deliberative event that this could further exacerbate inequalities, with the most able and confident navigating the system easily, at the expense of the most vulnerable, such as the elderly, the infirm and those without family to look after them or fight their corner. The need to consider the individuals cultural requirements is frequently not recognised. Recommendation The role of the advocate and care coordinator in the care team is key, with the need to redefine roles within the care family/care campus. Recommendation Population stratification for risk of disease, morbidity, hospitalisation, and so on, is a crucial component that needs to be reflected throughout the reformed care pathways. It should underpin all strategies for improving health outcomes and care pathways. The level of risk should be a major element that is considered in the collaborative care plan and could potentially inform the level of personalised budget available. Further development of practice based registers to target screening is needed, as well as the development of appropriate pathways for preventing further progression of disease.

What is Quality Care: What Stops this from Happening Now?


Our shared expectation with patients and families is for personalised care without boundaries. Every person with a long term condition should feel that they are in charge and are experts by experience. This should be supported by a personalised care plan that is agreed collaboratively with their family and professional carers. The aim of the care plan is to enable the individual to live as well as possible with theircondition, to achieve personal goals and live their lives to full potential. This section of the report looks at the need for everyone to work together to support people with long term conditions and their families and how that can be achieved. The case study below shows how personalised care can work well. Case Study: M is a retired nurse who has moderate ischaemic heart disease on angiogram. She also has irritable bowel syndrome and when stressed experiences severe abdominal pain. She has had exploratory surgery on several occasions but in recent years her surgical team have felt that surgery is compounding her problems and should be avoided if at all possible.
M has a difficult relationship with her local hospital. She is advised to come to hospital if she develops persistent chest pain and because of her known cardiac disease, she tends to be admitted. However when she is in hospital, she is very aware of her five volumes of hospital notes. She worries that staff think she is wasting their time and exaggerating her symptoms. The stress of being in hospital tends to trigger her irritable bowel syndrome, further prolonging her stay. M and her liaison psychiatry team developed guidelines for how she wanted to be managed while in hospital. This specifically recommended that she should be admitted for monitoring if she presents with chest pain but also warned staff that such an admission was likely to be followed by abdominal pain and advised that advice from a senior should be sought if there were concerns about conservative treatment. It made explicit Ms worries about being seen as a nuisance and being rejected. It predicted that the transition from intravenous to oral painkillers was likely to be difficult but that she can manage this with reassurance. Ms cardiologist and surgeon were happy to support these guidelines and to act as a point of reference for staff who do not know M. M kept several copies of these guidelines to give to staff and another copy was placed in her medical records. In the year before these guidelines were introduced, M spent 68 days in hospital over 3 admissions. In the year following the admission, M has spent 9 days in hospital, again over 3 admissions - and describes these admissions as more constructive and helpful. M says that the guidelines help staff to distinguish between her problems that need physical treatment from the issues that respond best to reassurance. The fact that she developed the advice, and that her cardiologist and surgeon supported this, helps her to feel that she is taking control and responsibility for her situation.

Generic Patient Pathway


The generic patient journey for people with long term conditions is described in Fig 3. For people with long term conditions and their families this is not a linear process. Central to all good care is collaborative care planning between patient, family and the healthcare team. This enables the patient to live as well as possible with their long term conditions, based on their personal goals, beliefs and needs, not on a single disease. It includes a plan for what to do if the conditions are exacerbated, and what to do to maintain health and wellbeing. Collaborative care planning should occur repeatedly based on need, and should also occur when that persons needs change. This is described as a time of transition. There is more information about this in the later section on transitions in care. Two transcending themes of care for people with long term conditions are prevention and self care. Prevention for the population, identifying and working with those at high risk will be most effective. However it is also key for the individual with a condition, both to prevent its worsening, and to prevent other long term conditions which commonly co-exist. Self care is a fact of life, not an option, for everyone with a long term condition.

Further information from Geraldine.Swift@cwp.nhs.uk


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Long Term Conditions Generic Patient Journey

PREVENTION

Presentation

Diagnosis

Initial Severity Assessment

Initial Education and Care Plan

Self Care

COLLABORATIVE CARE PLANNING Informed by assessment of: family and carer roles risk and disease severity self care ability personal goals function psychological health

Structured Self Management Education

Self Care

Self Care
Includes for patient and family agreed goals personal action plans self management education treatment plan support/care team agreed follow up and access exacerbation plan

Exacerbation

Palliative

Self Care

Step up Care

Maintenance

PREVENTION

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It is the role of the health and social care team to enable, equip and support the individual to self care as well as possible. This is a crucial element of collaborative care. Public and professional awareness for early presentation and recognition of disease are also key to the health of the population and the individual. There will come a time for the individual and family when palliative care is most appropriate. This will often need to start a number of years before the persons death. There are many challenges and barriers to patients receiving this good care at present and these will be highlighted within the report as four key challenges. Recommendation Patient pathways should reflect a greater focus on self care and recognising the inter-relationships between diseases. Collaborative care Collaboration in care is the hallmark of good long term condition care. This is collaboration between the person with the condition, their family and their professional care team. Increasingly people are living with multiple long term conditions and historically, as health professionals, we have focused on treating the disease. The emphasis must change from this, to enabling and supporting the individual to live well with their condition and to achieve personal life goals. Whilst the main emphasis in collaborative care is on collaboration between the patient, family and professional carer, true collaboration between members of the care team is also fundamental. A collaborative care plan, owned and held by the patient or advocate is essential to good care. This could be either electronically or paper based, according to the wishes of the patient. the care plan provides Betty with a structure for her treatment and a sense of control

education and negotiation will be needed to agree these. Care plans will then need to include action plans, exacerbation management and maintenance plans, as well as health and social care activities to enable disease management, self management, and an active life with the conditions. Plans for recovery and rehabilitation may well be components of the care plan. Follow up and support arrangements, and contact arrangements at times of increased need are also vital components. Key roles within the care team including family members need to be agreed, including the roles of advocate, care coordinator, key contact, and the roles of primary care, specialist care and social care team members. This vision of collaborative care planning extends the current concept of annual reviews that are used in many disease areas, so that they become more personalised and holistic in nature. An example of how this would work is shown below. Case Study the Year of Care The year of care describes the care that is required for a person with one or more long term condition over a defined period of time. It is agreed with the patient and family/carer at a collaborative care planning visit. Different components of care required within the year of care could be provided by a number of different local providers, including non traditional providers. This may particularly be the case for self management support. As well as defining and agreeing the care required, the year of care approach is seen as a form of patient led commissioning, with choice. This should be linked to locality commissioners, who are required to commission a number of providers to meet the need defined through collaborative care planning. This may also enable more appropriate methods of financing care required by people with long term conditions over a period of time, rather than at a single visit. Collaborative care planning that defines the year of care for an individual, would naturally link to a care passport, that would enable the patient to access that care at the time of need. There is more information about this later in the report. The concept of the year of care for diabetes is currently being piloted in three PCTs outside the North West. For further information contact John.Dean@bolton.nhs.uk For most people with long term conditions the focus of collaborative care planning will be with the extended primary care team. The role of primary care will need to be strengthened and developed with new skills and new ways of working in order to deliver more personalised care around patients. For those with more complex disease or need, specialist care givers from different professional backgrounds integrating with primary care will be involved. Recommendation A collaborative care plan should be the central component to all care, a true collaboration between the person with a long term condition, family, and professional carers The concept of transitions in care, as well as annual review, can be expanded to understand when collaborative care planning is needed by the individual. The care campus is a virtual location which is where collaborative care for the individual would take place. It is
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A collaborative care planning visit should therefore be the central component of the continuing patient journey with long term conditions. A designated care co-ordinator will have responsibility for ensuring a plan is developed and agreed. This should involve: Planning for the visit: the visit should be based on information. From a patient and family perspective this can include a self assessment of self management skills, disease control, psychological well being, functional capacity and effectiveness of the care team to support living with the conditions. From a care team perspective this will include population and individual risk assessment, of disease progression/complications and hospitalisation, via register management, full collection of biomedical measurement related to disease severity, control and co morbidity. The process of the visit: to ensure a collaborative approach, a shared agenda should be agreed between patient and care team. Assessments should be shared and individualised goals agreed. These will be personalised life related goals, and should be combined with biomedical goals, and personalised action plans to achieve these. Understanding of beliefs and values,

not a building or a place; but an approach to delivering healthcare focused around the patient and the primary care team coordinating function. Roles and functions of all care team members including family are defined and strengthened. It incorporates health and social care but is not just about growing the team. Accelerating the development of care focused on primary care requires change not just growth Within the campus are all those people and facilities that meet the individuals needs: The patient enters the centre consisting of case managers, care co-ordinators, educators, health advisors and so on. This should be expanded to include elements of social care, housing, employment The second layer consists of primary care doctors, acting as the quality managers, with skills and expertise on problem solving, prioritising individual medical need, managing the healthcare of a small population and linking with other clinicians as the medical lead and co-ordinator The third layer consists of specialists including advanced practitioners and consultants, who work with the extended primary care team on specialised problems and have an educational role Recommendation The care campus would be focused around the general practice/primary care. Transitions in care Collaborative care planning will need to occur on a regular periodic basis, dependent on need, and should occur at all times of transition. Traditionally we have seen transition as being when a patient crosses a healthcare boundary, such as from hospital to home or vice versa or from childrens to adult health care teams. However we believe that a transition for a person with long term conditions should be expanded to include any time where their care needs change. This should therefore, include a new medical or social care need including planned care, pregnancy, new disease or co-morbidity, change in severity of condition or need. It would also include other life changes such as changes within the family, employment or other living circumstances. Recommendation The concept of transition needs to be expanded beyond children/adult transition to any time of changing need. The extended primary care team Within the type of care envisaged, the roles of members of the care team will evolve. The primary care doctor will have an overarching role for the health of a defined population, in identifying need, prioritising care and having a problem solving and diagnostic role. Primary care nurses will have an extended role in care planning and care coordination, and the primary care team will be expanded to incorporate roles of other professionals including pharmacists, allied health professionals, health trainers and others. Active case managers will be one of the main carers for patients with more complex needs. The role of the specialist will be to support the primary care team, delivering and enabling care in the same setting when appropriate, with an expanded education role. Furthermore, all members will need to work
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across traditional boundaries of hospital and community care, health and social care. Skills of key staff will need to extend to health, social, and psychological needs. The case studies below demonstrate effective cross boundary and extended primary care team work. Case Study - Cross Boundary Working A 90 year old female patient with ischaemic heart disease, hypertension, type 2 diabetes and fibrosing alveolitis, was referred by her GP to the community matron for assessment of failing heath needs. The patient lived at home with her husband, who was suffering from dementia. The patients breathing caused increasingly distressing symptoms for the patient and her family. She became very breathless on minimal exertion requiring constant care and supervision from a number of professionals. The community matron arranged assessment for oxygen needs with the hospital respiratory physician and specialist nurse and arranged for treatment via a concentrator with the oxygen company. The patients oxygen requirements increased over the following weeks and liaison with the respiratory nurse and a Macmillan nurse was arranged regarding appropriate medication to relieve anxiety surrounding her increased breathlessness. The overall care package as her condition became palliative was funded by continuing health care, to include carers four times per day, seven days per week and a trained nurse seven nights per week. Social care and medical needs were managed and co-ordinated by the community matron. This collaborative working continued over a nine month period without a hospital admission and any intervention from her GP, until he prescribed the medication for the end of life pathway. The community matron ensured the patients husband received support from the dementia nurse to help prepare him for the impending death of his wife. The district nursing service provided nursing care once/twice per day and monitored for deterioration to enable the end of life pathway to be implemented. In her role as co-ordinator, the community matron visited on a daily basis to ensure the services involved in the care delivery were regularly updated and made aware of changes to the patients condition. The patients request not to be admitted to the hospice or her local hospital for treatment and to end her final days at home with her family was respected. Further information is available from Beverley.waddell@manchester.nhs.uk

Case Study - Extended Primary Care Team Diabetes care in Bolton is integrated across the care continuum and agreed by Bolton PCT and Bolton Hospitals NHS trust. The majority of routine care is provided by practice based primary care teams. These teams have continual skill development and maintenance within the practice and on formal courses by the specialist diabetes team. District wide needs such as retinal and foot screening and patient education are provided across the district by PCT staff. Retinal screening treatment pathways integrate with the hospital trust without the need for referral. Foot screening pathways integrate with the community based specialist diabetes team, which also works closely with hospital based colleagues in community and hospital settings. Patients with more complex needs are seen within the practice or in the town centre diabetes centre by the specialist diabetes team, which is part of the PCT. The team also works in the hospital for patients with diabetes who are inpatients, and supports other specialist practitioners such as those in cardiology and surgery. An out of hours advice line is provided by the specialist team for patients and professionals. Public health teams in Bolton have worked with local communities, the voluntary sector and the local council to develop social prescribing. Health professional can refer patients with long term conditions for social care, such as exercise, community support groups, housing or employment advice and so on, when the need arises. Further information contact John Dean on John.Dean@bolton.nhs.uk In summary, collaborative care planning is central to long term condition care, but will require a redefinition of relationships, the health care team, the location of care, and transitions. It will also need considerable skill development and cultural change for patients, families and care professionals. Whilst this may all seem rather distant from current care, there are many examples of components of this vision already in practice. Collaboration and integrated working across health and social care In the North West, local organisations are developing systems to promote and deliver better care through partnership working. Cumbria County Council, building upon single assessment arrangements, have aligned teams of community nurses and social workers for older adults around clusters of GP practices to enhance communication and integrated working. The agencies of each organisation have been formally trained and accredited in order to enable staff to assess and arrange the various services required across health and social care and without boundaries. This can include nursing staff assessing and arranging social care services and social workers assessing and arranging healthcare services.

Case Study Health and Social Care Collaboration The GP asked the district nurse to assess a patient for care following one of his visits at 3pm on a Friday afternoon. The lady who lived with her daughter, had rheumatoid arthritis. As infection had made her condition worse and she was unable to cope with normal activities of daily living. She had been sleeping in the chair for several nights and had developed a small pressure sore. She was unkempt. The district nurse ordered a package of home care to start the next day. The social worker reviewed the care the following week and found the lady was independent and coping nicely at home with the extra help from the home carer. The district nurse commented that by having the ability and permission to order a package of home care, the patient was able to stay at home and thus prevented a hospital admission for social care reasons. She also stated that even though ordering the package of home care was time consuming, she felt satisfied a good service had been offered. The patient was put under less stress by just having one professional assess her needs and order a package of care and this was much better all round. Further information from graham.hodkinson@cumbriacc.gov.uk Prevention and early detection More work in raising awareness of health and common diseases needs to be coupled with information on what the public can do to prevent illness for themselves. Theres more need for prevention. By the time you go to the GP in this situation you are ill 5 Community pharmacists give patients unparalleled access and could deliver tailored health promotion, self care and self management services based on their knowledge of individual patients conditions and their regular face to face contact. Investment in this area has traditionally been patchy, and this opportunity has never been fully exploited. The case study below demonstrates one of these opportunities. Case Study - Prevention A proactive approach to reducing levels of obesity within Lancashire has been taken by Central Lancashire PCT in partnership with Central Lancashire Local Pharmaceutical Committee, working with their weight management care pathway group. Building on a pilot scheme in Coventry, the PCT is finalising a community pharmacy obesity management service. This is based on a personalised behaviour change programme aimed to achieve target weight loss, educate and support patients with healthy living, prevent those at risk of developing long term conditions, and also focussing on traditionally hard to reach groups, children and men. Data indicated that there may be as many as 53,000 people over 16 years in central lancashire who are morbidly obese but are not recognised as such through GP practice registers. Benefits of the programme include weight reduction, increased activity and mobility and empowering people to self manage. However, perhaps one of the greatest benefits can be linked to the

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very essence of going to the pharmacy, and not the doctor for their care. Further information contact lstafford@rowlandspharmacy.co.uk Tel 07795 037677 Whilst the prevention of illness has been considered by the staying health pathway group, within long term conditions we cannot ignore the need for pro-active disease management. This relies upon the establishment of effective practice based registers, with a system to identify those who are at risk of developing a long-term condition. A responsive approach enables and supports the population in identifying how risk factors actually impact on the escalating incidence of long term conditions. The case study approach below enables the targeting of screening resources to best effect. Case Study - Targeting at Risk Patients The Knowsley local enhanced service commissioned by practice based commissioning groups was established in April 2007, to raise standards in diabetes management beyond the national QOF and establish additional capacity and capability outside hospital care. A key element to be addressed was the unidentified 1,700 6 patients not currently being treated based on expected population morbidity, and improved self management and education for patients. The programme plans to develop this service further to actively retrieve patients from secondary care and manage them as part of the diabetes pathway closer to home. The Knowsley diabetes patient group has been fundamental to ensuring the service is designed around the needs of patients. Further information from Nigel.Taylor@gp-n84605.nhs.uk Self care and keeping well Once the patient has developed a long term condition there is further potential for the range of healthcare professionals such as occupational therapists, physiotherapists and pharmacists, to support self care leading to better health and other outcomes such as: Increase in life expectancy Better control over symptoms Reduction in pain, anxiety and depression levels mprovement in quality of life with greater independence Days off work can reduce by 50% Increase in social capital, in other words more trainers, active citizens

Case Study - Exhale Using an active case management approach, Sefton patients with moderate to severe chronic obstructive pulmonary disease (COPD) were proactively introduced to a self-managed programme of pulmonary rehabilitation. The model was based on evidence of successful disease specific self management programmes. Assessment of patients quality of life improvements was demonstrated through a doubling of the average walking distance during the study. The new care pathway demonstrated a 23% reduction in COPD admission and a 20% reduction in A&E attendances for case managed patients. On a small sample of 30 patients, a saving of 81,425 was demonstrated. Further information from Nigel.Taylor@gp-n84605.nhs.uk The use of technology could be exploited by the NHS to maximum effect by providing support to dedicated staff on how to introduce new technology and how to measure its effectiveness. Look at Job Centre plus for an accessible model. It gets a positive outcome. You could have touch screen computers and individual advisors. This should be aped because it personalised services 7 Case Study - Using Technology Blackpool PCT introduced the Telehealth system as part of the new roles of community matrons. It promotes remote monitoring of blood pressure, weight, oxygen saturation, blood sugar monitoring and provides prompts for medication and questions regarding health status that can be set by the supervising clinician. Ten patients with complex needs were specifically chosen. Examples: Patient 1: Male aged 61 with learning disabilities, very anxious with COPD/ischaemic heart disease/heart failure and type 1 diabetes. Currently taking 15 medications and struggles to differentiate between anxiety and significant cardiac symptoms. Put on support education programme, medication reminder and developed confidence in his ability to self manage Patient 2: Female aged 62 with learning difficulties with ischaemic heart disease/heart failure/type1 diabetes/renal impairment/atrial fibrillation/ retinopathy. Would not engage with healthcare, abdicating responsibility for her illness. Repeated admissions due to hyper/ hypo-glycaemia as she would not monitor her blood glucose. Now monitoring blood sugar, more aware of the effects of missed medication and understanding the relationship between diet, insulin and illness Patient 3: Female aged 80 with end stage heart failure and severely impaired renal function. Monitoring blood pressure and weight whilst titrating medication, as part of education programme. Patient learning to recognise signs of worsening illness much earlier and initiate intervention. Blood tests still required fortnightly, but now carried out by primary care assistant rather than community matron Patient 4: Female aged 65 with heart failure and significantly impaired left ventricular function. Very time consuming home visits due to multiple non-specific symptoms whilst titrating medication. Now seen in clinic with clinical parameters available to staff

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Overall, whilst the initial number of contacts were high to set up the equipment, this has now reduced as professionals are familiar with and have confidence in the equipment. Whilst the numbers are small, a reduction of 75% hospital admissions, 43% reduction in home visits and 85% reduction in GP contacts was demonstrated. Front line case managers attribute this to early results are in relation to improvement of patients abilities to self monitor and recognise early signs of worsening condition and are very promising. There is a real shift in consultation type from face to face to telephone consultation increasing capacity. Patients have welcomed the project saying it is reassuring that my physical condition is being monitored. If any of the vital signs are abnormal, I am contacted and asked if I require assistance. As a person living alone, this is a comfort and bolsters my confidence and is so reassuring. Further information contact Kathryn.Smith@blackpoolpct.nhs.uk Ownership of care and personalised plan Individual budgets introduced in social care have demonstrated that people with long term conditions can take control over their own care and increase their sense of wellbeing. This should be extended to aspects of healthcare to give people more choice and control. Patients should be seen as the leader and owner of their care and have a personalised plan enabling them to live well with their conditions. The development of a personalised/ indicative budget dependent on need would enable patients to access support and services in a more entrepreneurial way and tailor the support to their values and requirements. Case Study - Personalised Budgets Helen, 64, from Oldham needed care when she came out of hospital. She had different carers looking after her but this did not work out. It was both exhausting and embarrassing for her. She asked her family to intervene. This was hard for Helen as her family were already subject to the demands and pressures of their own working lives. Helen said: I didnt know from one day to the next how I was going to manage, due to feeling unwell and also who would be there to support me. With her individualised budget, Helen now has the support of her choice. Moreover, she can choose how and when that support is taken up. Now, not only is her personal care no longer so embarrassing for her, but she does not have to rely on her family, even though they remain part of her natural support network. Further information is available from Jill.Stannard@cumbriacc.gov.uk Care passport The fundamental requirement of collaborative care described earlier should be further developed into a care passport, enabling people to access services directly at a time of need. These services could include libraries, physical activity, psychological support, medical and social care across the continuum. In addition the patient should hold their own care plan which could be either electronically or paper based depending on the needs of the patient, and
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have direct access to their health and social care record. However, until we address the importance of building this capacity for patients and carers in terms of knowledge, understanding and ability to take care of themselves for optimum health throughout the life of their disease, we will not achieve this. Anecdotal evidence is widespread this is still not the case for many patients and carers. Harnessing the opportunities of the internet to allow patients to access their records is one step nearer to integration and many GP practices are signing up to this. Patient involvement in their care planning and management can be greatly enhanced through patient level access to their health record. Case Study - Kidney Care on My Space Renal patients in Salford can access their records online through a password protected web-site. Have a look for yourself at www.renalpatientview.org/index.do Further information contact Donal ODonoghue at donal.odonoghue@srft.nhs.uk Case Study Access to Patient Notes via the Internet A GP practice in Hyde has introduced a system that allows patient access to their GP health record via the internet. This is a web based service for patients with long term conditions so they can access their records including test results, medication history, consultation history and so on. Patients choose who they share this with, but significantly, can access their record for other health professionals at time of need, such as visiting a pharmacist or out of hours GP. They can also access it from wherever they choose, whether that is at home, in a library or internet caf. Over 250 patients, many with long term conditions, have registered for this interactive service since it began. They can also see high quality information from other web sites linked directly to the medical record, such as Patient UK, and lab tests online UK. Security of the data is provided through password protection processes and each patient has their own unique password following an explicit consent process. Benefits reported include: Patients becoming active partners in the doctor-patient relationship Helping the clinician to help the individual, by having all the information to hand now Encouraging partnership working, including with social care Further information Amir.Hannan@nhs.net

What is Preventing the Move from Good to Great?


To achieve the care model described will require a cultural shift by patients, health and social care professionals and managers. Four areas of key challenges have been identified by this group that prevent good care from happening along the generic patient journey and the report sets these out next. Culture It is important that everyone with a long term condition has the opportunity to reach their personal goals and aspirations. This needs the whole team to adopt a recovery model and focus on peoples hopes and goals rather than

pathology and illness. A lack of public awareness of long term conditions prevents early detection and accurate early diagnosis and is a barrier to access. In particular services for men, young people and the black and ethnic minority community needs to be more tailored as these groups do not traditionally approach health care services. There is little information to enable us to understand why patients and carers perceptions mean they do not want to bother the doctor, but this is a prevailing attitude in some communities. Whilst the majority of the public believe more exercise would improve their health and many would like to take part in exercise, few actually change their lifestyle. A new social marketing approach is in the early stages through the Our Life programme. Excessive drinking is highlighted as a problem in all lifestyle surveys and a culture change is required to address this problem. Individuals believe government has a large role to play in tackling this issue. The public are aware diet has a major influence on health and do want to eat healthier. However, as with exercise, barriers such as cost and time are reducing their ability to make healthier choices. Clinical behavioural issues and challenges have arisen from within healthcare - fears of litigation, becoming risk averse, and professional self imposed barriers such as moving and handling risk in patients home, which healthcare professionals sometimes avoid, rather than minimise the risk. Clinical champions often follow failure cycles. In other words, when innovative care models are introduced, there is little planning to maintain these through the Local Development Plan (LDP) process. Funding stops, staff get disenfranchised, then the idea gets re-invented a few years later, and the cycle repeats itself. Cross organisational working Systems need to make the right thing the easiest thing to do, by removing barriers and enabling best practice. Greater integrated working irrespective of structures is the goal, but organisational boundaries currently do not support electronic communication across health and social care systems. This was considered inexplicable and frustrating to patients at the deliberative events with many examples cited. Quality needs to be measurable, transparent and audited. The National Sentinel audit of stroke care was cited as a good example of this. The group considered lack of resources for measuring quality, and concern that healthcare systems do not always measure the right things. Currently quality is measured in silos and not seen as a whole system issue. Only certain aspects of quality and disease areas are incentivised, such as the Quality and Outcomes Framework with many aspects such as support for self management, care coordination and care planning not included. Commissioning systems require further development to ensure consistency of quality, by commissioning and providing a common model of care that removes organisational boundaries as barriers. The lack of definition of quality from the patients point of view has not enabled meaningful patient choice to be taken forward. How can quality be made more transparent to patients when quality measures used dont readily translate to patients language? Clinicians talk about biomedical measures and doctors speak in blood test values, like the
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HbA1c test, but patients need to know what in means in real terms to them. In other words what do they have to do to enjoy optimum health? Current staff training and education to be able to interpret clinical data and translate this for patients and carers is not currently widespread. Patient experience is more difficult to measure - the annual Healthcare Commission patient satisfaction and patient experience results needs to be built into existing processes for reviewing clinical outcomes, for example cancer follow up visits. Both patients and healthcare professionals experience difficulty in signposting patients into appropriate services. A single point of contact to overcome this was a popular solution. Skills and capacity The group acknowledged a big skill gaps in identifying the need and in delivering self management support in both primary care teams and specialist care, despite patients wanting this. Barriers in this area include lack of information about how individuals can use the NHS to help themselves to make healthier choices. Face to face advice was considered by the voluntary sector stakeholders as the preferred communication route. Right now, not all health professionals receive education and training in long term conditions that would cover: The benefits of collaborative working The recovery model as used in mental health Systems and how they work together Mental health issues associated with long term conditions Specific conditions Screening and holistic assessment for long term conditions Risk factors and signs of relapse/deterioration so that appropriate specialist advice can be obtained quickly if and when needed Finance Mechanisms are required to incentivise PCTs to invest in prevention of long term conditions and in care pathways that deliver sustainable long term results, such as self care. Payment by results (PBR) was considered a major barrier by all members of the group. For example, resources and staff providing care are not always in the right setting - specialist diabetic nurses are often employed and paid for in a hospital setting - and the tariff supports this traditional model of care. There is a need to think about care beyond buildings, and the investment should allow organisations to quickly adapt their resources to reflect these new models of care. At the deliberative events, patients expressed concerns that there would not be sufficient resources to devote to primary care services. Pump priming and double running of services prior to the pathway reform are resisted on resource grounds, and this area needs to be addressed in future delivery plans. Little or no investment in supporting the spread of best practice and sustainability was cited as a factor here by members of the group. The group agreed resources should be channelled to the areas of biggest impact and not always into specialist niches for small groups. Examples were stroke care and thrombolysis where the evidence was established and reflect the current biggest cause of mortality and disability.

Recommendation NHS organisations need to have mechanisms to invest in long term and broader outcomes of care

Implications for Delivery Models


The challenges across different health sectors and local authorities are only too plain to see and although all have the best interests of the patient at heart, the lack of integrated care planning and communication fails to deliver the world class goal to which we aspire to as fair, personalised, effective and safe health and social care. Providing high quality care for people with long term conditions requires organisational structures to support integrated working and defined care co-ordinators with authority to enable care across settings. Lack of co-ordination and ownership coupled with organisational silos creates problems in care delivery on a daily basis. We have previously demonstrated what a co-ordinated approach can achieve, but as already stated, good/best practice too often exists in pockets. In this section of the report we look at what needs to be done to address this. A new model of care should be commissioned that enables integration of health and social care, with the roles of professionals changing to meet patients needs. There needs to be a clear description of what primary care should be like to incorporate social care, community care and specialists. The need to integrate mental, physical, social and emotional health in a holistic approach requires a broader range of skills within the primary care team. If general practice is the location of the care campus for most patients, then the primary care team will need to develop, not just expand and incorporate many other aspects of community care including social care professionals. The role of the specialist will be in supporting the primary care team. Clinical teams will need investment in training to enable them to deliver these new models. New services and roles within the community require investment in the infrastructure to enable the quality of services to be measured through clinical audit. This audit might cover the percentage of patients with a care plan and percentage of patients with telephone numbers to ring in a crisis. Social marketing techniques could be used to create a cultural change that promotes self management, ownership of care and staying healthy. This forms part of our NHS North West Our Life strategy.

professional carers should enable this. However, the resources required to capture data to the standards of the Sentinel audit on stroke, for example, should not be underestimated. Personal care records for patients enabled by IT, can be achieved without major resources, as shown in the Hyde GP case study earlier. The greater use of technology in enabling greater access to information, particularly for those staff working in more remote and rural areas and tele-health solutions, could reduce travelling inconvenience for both patients and staff. World class commissioning and practice based commissioning starts with the needs of patients and families, all stakeholders involved in developing commissioning plans, and setting relevant standards. A primary care model with clear specifications will need to be commissioned. Incentivising collaborative care between organisations and professionals, such as training in new skills, team working and so on will need to be included in the commissioning specifications within primary care and specialist services. Personalised budgets through patient level costings of packages of care would enable better informed decision making on how to improve the value of the support for patients, and reflect individual priorities. The role of health educators in maximising the active role of patients and carers is crucial in the future. Education in schools on prevention and health is an opportunity we have not yet fully realised. Agreed quality measures across organisations would enable a less interrupted patient journey. So, for example, PHQ9 targets for depression screening in primary care enable earlier interventions before progression of the condition. Hospitalisation rates for avoidable admissions should be more actively used to stimulate the discussion on how we can better prevent exacerbations requiring admission. Incentives need to reward improvement rather than a fixed target. The NHS North West strategy for Advancing Quality has started implementing this in pilot sites for acute care and a similar approach in primary care should be developed. Mechanisms need to be developed to improve the spread of best practice across organisations, and increase the systematic adoption of good initiatives.

Conclusion
To move a service for long term conditions from good to great means we need to place the patient at the centre, delivering a personalised care plan, personalised budgets and care without boundaries. To achieve this will require a significant cultural change including an extended primary care team and development of broader skills. Commissioning for population needs to enable people with long term conditions live well as part of their community. A whole system approach is required, working across not just health, but social care, education and employment, with meaningful involvement of the voluntary and private sectors, enabled through the greater use of technology. The aim can be realised by learning and spreading current best practice, supporting clinical leadership and innovation, and by commissioning integrated care focused around primary care and the individual. This will enable people to live well with their long term conditions.

Feasibility
Further work on the feasibility testing will be completed through scenario testing.

Implications for Enablers


The current initiative of a year of care being piloted should enable the health service to identify how the collaborative care planning process can be most effective for this pathway. The better use of information technology is a key enabler, but the technical solutions require different ways of working by clinicians to maximise these benefits. Quality data systems and information available to patients and
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Appendix 1
1

Appendix 3
Reports from the following national and regional NHS Review engagement events have been incorporated within the overall review process by this group, as shown below. National deliberative event (first) September 15 2007 Our NHS Our Future Interim Report October 2007 National Clinical Summit November 21/22 2007 North West Clinical Congress November 27 2007 Focus Groups Report from Picker Institute - Exploring attitudes towards and experience of the NHS in the North West Wider stakeholder event December 12 2007 National deliberative Event (second) January 24 2008 North West staff stakeholder event January 29 2008 November 2007

Notes Deliberative events are large forums organised to stimulate discussion and debate around key issues Comment from participant at public deliberative event in January 2008 Balas EA, Boren SA; Managing clinical knowledge for health care improvement. Yearbook of Med Informatics 2000; 65-70 Comment from participant at staff deliberative event in January 2008 Comment from participant at public deliberative event in January 2008 York University PBS forecasting tool Comment from stakeholder event in December 2007

Appendix 2
We would like to thank the following organisations for their comments and best practice examples: Blackpool Primary Care Trust Bolton Primary Care Trust Bury Primary Care Trust Central and Eastern Cheshire Primary Care Trust Central Lancashire Local Pharmaceutical Committee Central Lancashire Primary Care Trust Central Manchester and Manchester Childrens Hospital NHS Trust Cheshire & Wirral Partnership NHS Foundation Trust Christie Hospital NHS Foundation Trust Cumbria County Council East Sussex Local Pharmaceutical Committee Heywood, Middleton and Rochdale Primary Care Trust Knowsley Primary Care Trust Manchester Local Pharmaceutical Committee Manchester Primary Care Trust Motor Neurone Disease Association National Technology Adoption Hub North Lancashire Primary Care Trust Oldham Primary Care Trust Salford Primary Care Trust Salford Royal Hospitals NHS Foundation Trust Sefton Primary Care Trust Stockport Primary Care Trust Tameside and Glossop Primary Care Trust The Walton Centre Wigan Council

Details of the Clinical Pathway Group meetings: Clinical pathway group meeting 1 Clinical pathway group meeting 2 Clinical Pathway group meeting 3 Clinical pathway group meeting 4 Clinical pathway group meeting 5 October 30 2007 November 12 2007 November 29 2007 January 15 2008 February 12 2008

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Appendix 4
Input of wider stakeholders Long term conditions wider reference group. Contributions were received through telephone contact, emails, and ad-hoc meetings. NAME John OReilly Kathryn Smith Keatley Adams Richard Sly Jerry Martin Mark Dickinson Peter Trainer Dr Vaikom Mahadevan Peter Selby Helen Pattie Julie Byron Patrick McDowall Michelle Timoney Helen Bowker Bev Waddell Georgina Bosson Helen Hosker Lesley Vernon Louise Stuart Sue Hamman Max Winson Sally Mann Ivan Benett Graham Barton Steve Bentley Zuber Ahmed Barbara Green Georges NgMan Kwong Liz Stafford Pat Graham Marie Barnes Julie Hendry Caroline Weston Diane Robson Jennifer Sigley Robert Mitchell Gary Simpson Gershan Davies Swamy Narayana Shirley Smith ORGANISATION Aintree Hospitals NHS Foundation Trust Blackpool PCT Bolton PCT Bury Council Bury PCT Central & Eastern PCT Christie Hospitals NHS Foundation Trust Central Manchester and Manchester Childrens University Hospitals NHS Trust Central Manchester and Manchester Childrens University Hospitals NHS Trust Diabetes UK Diabetes UK Lancashire Teaching Hospitals NHS Foundation Trust Liverpool PCT Manchester PCT Manchester PCT Manchester PCT Manchester PCT Manchester PCT Manchester PCT Mid Cheshire Hospitals NHS Trust Mid Cheshire Hospitals NHS Trust Mid Cheshire Hospitals NHS Trust North Cheshire Hospitals NHS Trust North Cheshire Hospitals NHS Trust North Cheshire Hospitals NHS Trust Oldham PCT Oldham PCT Pennine Acute NHS Trust Rowlands Pharmacy Bolton Hospitals NHS Trust St Helens and Knowsley Hospitals NHS Trust St Helens and Knowsley Hospitals NHS Trust Sue Ryder Care Trafford PCT Trafford PCT BMA Sefton PCT Aintree Hospitals NHS Foundation Trust East Lancashire PCT Trafford Hospitals NHS Trust

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Appendix 5
Members of the long term conditions clinic working group NAME Jill Stannard (Chair) Jayne Butters Karen Clancy Sandra Counsell Mohan Datta-Chaudhuri John Dean (Vice Chair) Elaine Gregory Heather Grimbaldeston Madeline Harding John Lyne Anthony Mackay Ram Nalla Donal ODonaghue Melanie Ogden Thomas Philips Julie Rigby June Roberts Susan Summers Geraldine Swift Nigel Taylor Helen Tyrer Adult Social Care Community Pharmacist Respiratory Nurse Consultant Occupational Therapist Consultant Medical Director Community Nurse Manager Public Health Dentist Practice Manager Rehabilitation Manager Consultant & BMA Consultant SHA Lead GP Neuro-Rehabilitation Consultant Physiotherapist Nurse Consultant (respiratory) Deputy SHA Lead Consultant Psychiatrist GP Physiotherapist ORGANISATION Cumbria County Council Oldham PCT Heywood, Middleton and Rochdale PCT Wigan MBC Stockport NHS Foundation Trust Bolton PCT Central & Eastern Cheshire PCT Central and Eastern Cheshire PCT North West Ambulance Service NHS Trust Bury PCT Blackburn with Darwen PCT North Cheshire Hospitals NHS Trust Salford Royal Hospitals NHS Foundation Trust NHS North West Blackburn with Darwen PCT Salford PCT Salford PCT NHS North West Cheshire and Wirral Partnership NHS Trust Sefton PCT Manchester PCT

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our NHS

our future

End of Life Care Clinical Pathway Group


Our vision: To create a world class end of life care service for people in the North West that enables choice and ensures quality. We aim to: Achieve a 10% reduction in hospital deaths through enhanced community services by 2012
EXECUTIVE SUMMARY
This report is a collation of evidence, facts and opinion from an experienced group of stakeholders across the North West about current and future services in end of life care. The scope of end of life care is based on the Department of Health (DH) working paper and encompasses adults with any advancing, progressive, incurable illness such as cancer, heart failure, renal failure, chronic obstructive pulmonary disease, dementia, stroke, and neurological disease. The scope includes care given in all settings, including at home, care homes, whether personal care or nursing care, community hospitals, hospices, acute services, prison or other institutions. The North West end of life clinical pathway group has developed a five phase pathway shown in the main report which follows the persons journey from advancing disease through to death and during bereavement.

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According to the NHS end of life care programme 2007 the principles that underpin a good death, are ensuring: All people are treated with dignity and respect at the end of their lives Pain and suffering is kept to an absolute minimum for people approaching the end of life All those approaching end of life have access to physical, psychological, social and spiritual care Peoples needs, priorities and preferences for end of life care are identified, documented, reviewed, respected and acted upon wherever possible The many services required are well co-ordinated, so that each person receives seamless care High quality care is provided in the last days of life and after death Carers are appropriately supported both during a persons life, at death and bereavement Health and social care professionals at all levels are provided with the necessary education and training to enable them to provide high quality care Services provide good value for money for the taxpayer The person and their carers have access to care and support

The North West End of Life Care Model


The model of delivery advocated by the group uses a whole systems approach for all adults with a life limiting disease, regardless of age and setting, moving from recognition of need for end of life care, to care after death. In order to apply the model, staff across organisations are required to understand the needs and experiences of people and their carers. The report sets out a series of quality standards for end of life care and explains how these should be implemented. The model comprises five phases as described below, with some examples of practice highlighted:

1
Advancing Disease

2
Increasing Decline

3
Last Days of Life

4
First Days after Death

5
Bereavement

1 year

6 months

Death

1 year

Phase 1 - advancing disease, with a time frame of one year or more. Example of practice required; the person is placed on a supportive care register in a GP practice or care home. The person is discussed at monthly multi-disciplinary practice/care home meetings. Phase 2 - increasing decline, with a time frame of approximately six months. Example of practice required; DS1500 eligibility review of benefits, preferred priorities for care noted, advance care plan in place and trigger for continuing healthcare funding assessment. Phase 3 - last few days of life, examples of practice required; primary care team/care home inform community and out of hours services about the person who should be seen by a doctor. End of life drugs prescribed and obtained
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and Liverpool care pathway implemented. Phase 4 - first few days after death, example of practice required; prompt verification and certification of death, relatives being given information on what to do after a death (including D49 leaflet), how to register the death and how to contact funeral directors. Phase 5 - bereavement, with a time frame of one year or more. Examples of practice required; access to appropriate support and bereavement services if needed. With these principles in mind, the group has developed the following key recommendations: A robust integrated commissioning framework based on the North West end of life care model should be

Foreword
developed across health, social care, voluntary, charitable and independent sectors, with identified strategic leadership within each PCT. This framework should enable a 10% reduction in hospital deaths by 2012 Quality standards with associated measures should be developed to support self assessment based on the North West end of life care strategy by August 2008 A public campaign should be established to raise awareness about end of life care, resulting in a more open conversation within society that also engages peoples views about death and dying NHS North West should continue to build on the current success of implementation of the national end of life care tools; Gold Standards Framework, Liverpool care pathway and preferred priorities for care Advance care planning should be undertaken in all sectors of care, preferably electronically based. A persons preferences and choices should be identified, fully shared with all relevant staff and be accessible 24 hours a day, seven days a week Fully integrated and co-ordinated services should be available across organisations with 24/7 access to specialist palliative care services. This should be underpinned by a single point of access for the person and their carers including documented evidence of the use of supportive care registers Evidence should be in place of comprehensive holistic assessment that clearly meets the persons individual needs. The assessment should be based on the North West end of life care model and standards Support should be provided for carers of all ages during the persons life and during the bereavement phase Workforce development should include mandatory training and education in end of life care for all relevant staff, both clinical and non clinical on a continuing basis, with a particular emphasis on effective and sensitive communication. This is fundamental to ensuring quality in end of life care and must be a key feature in local delivery plans A strategy should be developed by the SHA, PCTs and local authorities to support a culture of change in end of life care, incorporating research, innovation and service improvement A financial investment programme should be identified to support the delivery of the health and social care commissioning strategy This report was produced by a process of engagement and involvement of a wide diversity of staff from across different professions and organisations and from listening to the public. The group members all shared experience, commitment and knowledge about end of life care and services. The report is therefore grounded in reality and is supported by evidence and local intelligence. For those of you involved in end of life care there will not be many surprises, but what it does do is bring together a considered review of the whole system and focuses on the particular issues that were considered important for the services and people in the North West. We are particularly pleased with the model of care we developed and used as the basic template for the pathway review. The model is clear and simple and succinctly outlines the parameters within which the end of life care review was based. We identified 11 recommendations for action and we believe that if these are delivered it will build on the good practice already in place, and also add the following important aspects to our current services: The development of agreed standards to underpin the commissioning of services which will start to improve the consistency of services across the North West The importance of working together as a single pathway across organisations that supports choice, personalised care and improves the efficiency and effectiveness of the pathway for people at a time when this is needed most The importance of using evidence based practice through ensuring all staff are knowledgeable and competent in end of life care The recognition of end of life care services as a discreet pathway that needs to be resourced appropriately We have set one single vision and target that is based on what people have said they want and currently too often is not achieved. Our vision is: to create a world-class end of life care service for people in the North West that enables choice and ensures quality. We aim to: ahieve a 10% reduction in hospital deaths through enhanced community services by 2012. Organisations in the North West have a history of working together and we are known for our excellence in end of life care. Our target is ambitious, but our real challenge is to ensure that in the process of delivering the target we modernise our systems and processes, so that they are truly person centred and ensure choice is available to all over time. It should not be a quick fix approach but a whole system team approach, with a long term sustainable plan that improves end of life care for patients and their carers across the region.

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Introduction
Dying, death and bereavement are a natural part of life, but are processes that are increasingly dealt with by the medical profession. Dying as a phenomenon is often hidden and separate from the wider family and usually from the local community. As a result, our community/society has lost its knowledge and confidence in supporting each other and there are additional fears associated with dying, death and bereavement through mis-information and media images of painful and difficult death (Kellehear, 2005). Here we set out some of key statistics around death and dying in the North West. North West end of life data analysis Around half a million people die in England in each year The large majority of deaths at the start of the 21st century follow a period of chronic illness, such as heart disease. In the North West, the total number of deaths in 2006 decreased by 4,960 (6.6%) compared with those in 2002. All but one of the 24 PCTs within the region have seen a decrease in the number of deaths; this is most distinctive in Sefton PCT, where the number of deaths, fell by 14% (496) over the same four year period. The remaining PCT which was Warrington, saw an 5% increase in the number of deaths (85). There have also been distinct changes in the age at which people are dying across the North West. Most notable of these is the drop of over 1.54% of people dying aged 65 to 74. Of the three areas within the North West, Greater Manchester is the only area to see an actual increase (29 deaths) in the number of people dying before the age of 54. On a regional level, the number of people dying across all age bands fell between 2002 and 2006. Cause of death Across the North West region there have been some improvements in the number of deaths caused by ischaemic heart disease, cerebrovascular and other circulatory diseases. However there has also been over 1% proportionate increase in respiratory deaths and 0.9% increase in neoplasm diagnoses, cited as the cause of death within the region over the past four years.

Place of death Place of death remained relatively static between 2002 and 2006 across the North West. The acute setting is by far the most common place of death, accounting for almost 60% of all those recorded. This does not seem to differ when age, gender, disease or locality, are taken in to account. The second most common place of death is at home, which accounts for just under 20% of all deaths recorded across all the PCTs within the region. It would appear that each place of death has a different common cause of death. For example, the most common cause of death reported within the hospice setting was neoplasm, where as within the nursing home setting, cereberovascular disease was far more common than any of the other causes. These types of results are also replicated when looking at data from individual PCT areas and would appear a common theme across the North West as a whole. More information can be found in the graphs in Appendix 1. Hospital deaths There were 38,250 deaths in hospitals in the North West in the financial year 2005/06 and these were patients who had been admitted to hospital. Of these, 6% died on the day they were admitted to hospital and 10% died on the following day. Of all the admissions to hospital for these patients in the final year of their lives, 39% of patients had a single admission, 53% had two to five admissions and 8% had more than five admissions. It is estimated that each of these patients spent an average 34 days in hospital in the final year of their lives, including 17 days in their final stay in hospital This data supports the groups aim to reduce deaths in hospital by 10% and to provide enhanced provision in the community, ensuring choice and quality.

The Case for Change


There are many areas of good practice across the North West in end of life care, but there are also some challenges that need to be addressed. This section sets out some of the barriers and challenges we face and also outlines the quality standards for end of life care that we should be working towards and how these could be implemented. Barriers to good quality care currently include: Social and cultural perceptions of death and dying are problematic and death is not openly discussed There is a need to recognise the importance of public health in relation to death and dying There is currently a lack of robust commissioning plans for end of life care There is inconsistency in the provision of specialist palliative care services, access and a lack of coordinated services Out of hours services and access to 24 hours, seven days a week care and support vary There is lack of suitably skilled/trained staff There is a dis-jointed approach to working across organisations, including the voluntary, charitable and independent sector

NHS North West: Cause of Death 2006

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There is inconsistent access and provision of continuing healthcare funding Evidence based practice across health and social care is inconsistent There is a lack of co-ordinated assessments, integrated care records and accessibility to records, especially out of hours There is insufficient sophisticated and integrated information technology provision, resulting in isolated systems There is not a comprehensive system for obtaining the persons preferences and cross organisational communication and working Welfare rights issues are inconsistently discussed with the person and their families There is a need for equal access to spiritual and psychological services across organisations Uptake of the three national end of life care tools across the North West varies Too many people are dying in hospital - 60% in the North West compared to where people want to die. Evidence suggests that the majority wish to die at home The importance and needs of carers are often overlooked Having identified these, the group went on to discuss the following issues that all support the need for change. Culture There is a professional and public ethos of keeping people alive no matter what, which means death is perceived as negative or a failure and is not openly discussed. This creates negative perceptions and attitudes amongst people, families, and professionals. In an engagement event for the public held in the North West, they called for more discussion about death in society and local communities and also between clinicians and patients with long term illnesses. How do we get people to talk about it while they are healthy? We can start with when they make a will Involving people with chronic long term conditions and the carers it is still a taboo - people who are dying cant talk about it themselves (National Health Service Northwest, 2007a) Strategic commissioning There is a lack of integrated commissioning, planning, contracting and monitoring of service delivery across health and social care. This will require a PCT and local authority joint approach. There is a requirement for a robust service specification for health and social care and quality standards for end of life care. The lack of access to 24/7 services and a requirement for a co-ordinated response to out of hours care calls also need to be addressed This picture is reflected across many parts of England, but there are many examples of excellent practice, particularly in the North West. This is shown in some of the individual experiences featured in Appendix 4. The real challenge is achieving consistency of service across local communities so that people, wherever they are, receive the excellent care they deserve. The baseline reviews completed by the PCTs will help to inform the commissioning process for the future and identify gaps in provision and areas of excellence.
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The End of Life Care Pathway


This is what the group thinks the end of life care pathway should involve: Starting the conversation - the lack of acknowledgement of the importance of end of life care, together with failure to recognise and assess the approach of last stages of life, means that there is usually limited or no conversation with the person and or their family. The use of prognostic indicators to guide clinicians is poor and needs more open discussion and development. The importance of having effective communications skills is fundamental to improving the conversation - staff without these skills may avoid the subject. It is at this early stage, though, that many important issues can be safely raised, such as, tissue and organ donation. Assessment and care planning - there is a lack of a whole systems approach to assessment and care planning. Staff amy be wary of advance care planning and this is often due to a limited understanding of the disease trajectory, limited communication skills, confusion regarding roles and responsibilities and inadequate health and social care assessment skills. Co-ordination and register - there is variable implementation of supportive care registers across primary care/care homes. An identified responsible lead professional is not always evident. Transfer of information across services can be fragmented and often delayed. Integrated commissioning and service delivery - there is a need for strategic and operational leadership at provider level and a requirement for staff to have clarity in their role and responsibilities. Working between different organisations and systems can cause confusion and result in a fragmented service. There was unanimous support from the public and the clinical group that it is vital that an integrated community strategy and service between health and social care is developed, and that staff working within the system have clear understanding about their roles and responsibilities. Funding across services is very fragmented and creates tension in the system. This lack of a coherent funding base creates many gaps and discontinuity of service. There is no doubt that the ideal provision to achieving a 24 hour, seven day service will be difficult to achieve without improved joint funding. Other areas of inadequacy are: Psychological and spiritual care, which we identify as unrecognised and under valued Isolated and incompatible IT systems can mean that hospices are often unable to be universally linked to NHS net The roll out of end of life care tools is good, but there are still pockets where very little, if anything is in place Lack of protocols for managing end of life care for people, which may result in risk averse behaviours affecting decisions relating to the persons care, such as timely discharge from hospital through a rapid response team Review - there is a lack of consistency regarding the process for reviewing a persons care and where it is done; there are often no set triggers for further reviews. The identification of a lead professional such as a key worker at different points on the pathway is considered best practice and central to supporting effective reviews.

Last days of life - There is a variation in the uptake of the Liverpool care pathway. The dying phase is often difficult to recognise, particularly in non-malignant disease and therefore a person may not be identified as being in this phase. When it is recognised, unless the person is on the register for end of life care, there is a lack of protocols to manage end of life care, creating inappropriate transfer to an acute setting. This results in high numbers of people dying in hospital rather than where they would wish/choose to die (usually at home). Deaths in the acute setting are associated with environmental issues in regard to privacy dignity and respect. Care after death - the problems that arise after death are a mixture of issues related to either where the patient died, whether in the home or in the community and/or general inconsistency of provision, for example, bereavement support may not be available. The lack of protocols for managing expected out of hours death in the community can led to unnecessary calls, which often results in the need to involve the police and coroner. This creates further distress to the carer and family. In the hospital there are often concerns about viewing the deceased and these relate to the environmental factors such as poor facilities in the mortuary, lack of privacy and personal time in the ward. Support for carers - there is inconsistent support for carers across sectors and organisations. This can create conflict between the person and their carer, especially if the carer has not been involved in any initial discussions. An example of this would be the persons preferred place of care and death. There is also a lack of knowledge and provision of information about referral routes to readily accessible welfare rights, continuing healthcare funding, respite services, and so on.

Funding There appears to be a lack of incentives and/or support for training time for staff in care homes and also a lack of understanding about resources that may be available to unpaid carers, for example attendance allowance. Funding for end of life care needs to be developed to identify the true cost for this service. In the current system, funding for end of life care tends not to be uniquely attributed to this service, except perhaps for specialist medical posts. There is difficulty in accessing funding for continuing healthcare, in particular for people with a non-cancer diagnosis. Differences such as funding source, which is free in the NHS and not in social care, and barriers between social care and healthcare create tensions.

Workforce and Education Development


Lack of appropriate staffing can result in sub-optimal care and is of particular concern in terms of providing a 24 hour service across health and social care. The workforce for end of life care covers many different disciplines and work across many different organisations, which makes it more difficult to capture the total workforce picture. There are however some areas where we know there are shortages and hard to fill posts, particularly in specialist areas like palliative care medicine. There is a requirement to integrate end of life training in pre and post registration courses for doctors, nurses, allied health professionals, social workers and pharmacists. It is also important to recognise the need for education for many other groups who are often not considered, for example paramedics, care home staff, prison staff, domestics, porters and reception staff. There is a requirement for an education, skills and training strategy to be developed for end of life care, which should include mandatory communication skills training for relevant staff. Measurement and information systems The current systems for monitoring and assessing end of life care services vary across different organisations, which make comparisons either impossible or difficult. The data collected nationally for palliative care is not mandatory and the general accuracy is questionable due to the variation in the system. The importance of information and intelligence on the quality of services delivered needs to improve, so that commissioners and providers can benchmark themselves against outcomes, assess progress and most importantly demonstrate that services are meeting peoples needs.
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The North West End of Life Care Model


The model of delivery advocated by this group uses a whole systems approach for all adults with a life limiting disease, regardless of age and setting, and this is set out in this section of the report. It moves from recognition of need for end of life care, to care after death. In order to apply the model, staff across organisations are required to understand the needs and experiences of people and their carers. The pathway model identifies five key phases, outlined below, along with some examples of practice.

1
Advancing Disease

2
Increasing Decline

3
Last Days of Life

4
First Days after Death

5
Bereavement

1 year

6 months

Death

1 year

Advancing disease - timeframe is one year or more. Example of practice required, the person is placed on a supportive care register in practice/care home. The person is discussed at monthly multi-disciplinary practice/care home meetings. Increasing decline - timeframe is approximately six months. Example of practice required, DS1500 eligibility review of benefits, preferred priorities for care noted, advance care plan in place and trigger for continuing healthcare funding assessment. Last days of life - timeframe is the last few days. Examples of practice required - primary care team/care home inform community and out of hours services about the person who should be seen by a doctor. End of life drugs prescribed and obtained, and Liverpool Care Pathway (LCP) implemented. First days after death - timeframe is the first few days. Examples of practice required include prompt verification and certification of death, relatives being given information on what to do after a death (including D49 leaflet), how to register the death and how to contact funeral directors. Bereavement - timeframe is one year or more. Examples of practice required include access to appropriate support and bereavement services if required.

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What would Good Quality Care Look Like and what Prevents this Happening?
The profile of end of life care in health and social care has been relatively low in the past. This section provides a framework for good quality care using evidence of best practice. It covers a range of quality standards and how these should be implemented. Case studies showing how patients have benefited from these quality standards where they have already been used in the North West can be found in Appendix 3. Public profile In a 2005 UK survey by ICM (Feinemann, 2006) 67% of people over 65 had made a will and 51% had discussed how they would like to die, which leaves a large majority of the population not having had any discussion. Death and dying is a subject that is often avoided in society today and in the same study 66% of bereaved relatives had never discussed with their loved ones their preferred place of care and death. Public health approaches to end of life care mean a pursuit of the goals of prevention, early intervention and harm minimisation within all end of life care policy and practice initiatives. It builds community capacity through working with local communities, public education, legislative and policy changes (International Working Group on Death, Dying & Bereavement, 2005:159). Below are a series of standards for offering the best quality end of life care for people in the North West and how these could become a reality. Quality standard Health and social care commissioners will be required to develop a public health strategy (promoting health and wellbeing) which is based on changing societys attitude to death and dying and supports reducing bereavement morbidity and mortality (DH, 2006b:17). The principles for implementation are: Patient and public involvement forums are actively engaged in end of life care services (DH, 2007b) A public health strategy, promoting health and wellbeing and framework is in place, with an emphasis on social and corporate citizenship responsibilities, with an emphasis on tissue and organ donation Satisfaction surveys/complaints are regularly undertaken and are proactively used to improve services There is a level of engagement with the media, with an emphasis on the importance of sharing the experience of a good death LINks forums will be actively engaged in end of life services Hospices and palliative care services have community engagement as part of their local delivery plan Recognise the importance of activities undertaken by community, independent and voluntary sector organisations, which contribute to end of life care, resulting in less pressure on statutory services (NHS Northwest, 2007b)

Quality standard Commissioners will work with local partners including the voluntary sector and local authority to establish long term strategies for understanding and addressing the needs of the people they serve (DH, 2007d). Commissioning is underpinned by compliance with the NICE and the end of life care guidance within the national service frameworks (NICE, 2004) (DH, 2005a). The principles for implementation are: A joint health and social care commissioning framework is in place for end of life care services Commissioning needs to be based on the needs of the local population, with an appropriate range and volume of services (NICE, 2004:11) Three to five year contracts with service providers to encourage stability of service delivery Each PCT has a commissioner for end of life care PCTs should ensure that they commission services from healthcare professionals who have received end of life training at the appropriate level and can demonstrate this (DH, 2007a:70) A quality outcomes framework is in place as part of the commissioning framework. Contracting should be transparent, equitable, of high quality and have measurable outcomes Joint PCT and local authority monitoring systems for end of life care should be devised and audited The Healthcare Commission and its future successor needs to include end of life care services in their assessment framework Pooled budgets for health and social care Development of compatible integrated information systems An end of life care co-ordinating centre for out of hours with an attached rapid response team, working as a one call centre system Systems in place in all care settings to help with anticipating prescribing and access to drugs and equipment within identified time limits Prognostic indicator guidance is used for every person with an identified life limiting disease (Thomas & Sawkins, 2007) The views of people and their carers are taken into account in developing and evaluating end of life care services (NICE, 2004:7)) Consistent and effective services 24/7 across both generic and specialist services Local area agreements should incorporate local targets in end of life care Joint strategic needs assessment plans incorporate end of life care Quality standard There is an effective end of life care pathway based on the North West model that is person centred. The pathway should be underpinned by strategic partnership, with co-ordination across all organisations and at operational level between services delivered by hospitals, PCTs, social care, ambulance and voluntary sector to provide a seamless service (DH, 2006b).

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End of Life Pathway


Over the last three years the national end of life care programme has demonstrated the importance of partnership working needed to implement the recommended tools of good practice (NHS End of Life Care Programme, 2005; Lancashire & South Cumbria Cancer Network 2008; MCPCIL, 2007). Following the publication of Building on the Best - choice, responsiveness and equity in the NHS (DH, 2003a), it was shown that people and carers want choice over care at the end of life. This has been reinforced in the consultation documents Our Health, Our Care, Our Say (Opinion Leader Research, 2006). The principles for implementation are: Comprehensive implementation across services of the three national tools: PPC recognises the importance of choice and the need for advance care planning to ensure that people have choice GSF provides a model for primary care aiming to improve communication between the person, families and healthcare professionals and adapted for care home setting Liverpool care pathway for the dying developed to take the best of hospice care into other care settings, and includes symptom control guidelines

Identification of the lead professional, or key worker, is paramount to ensure timely communication

Assessment & Care Planning

Quality standard All services must ensure that the needs of the person with an advancing, life-limiting illness are assessed and the information is communicated within the team and to other professionals as appropriate. Advance care planning and the end of life care tools are used in all care settings (NICE, 2004:11) The principles for implementation are: Guidelines for assessment are in place in relation to the following domains - physical, including personal care; psychological, social, religious/spiritual, cultural and carers needs; information for individuals and their carers (DH, 2004a:18) Annual audit of PCTs and hospital trusts of the uptake of the end of life care tools and quality of care achieved Records clearly articulate the phase in line with the North West model. These must be transferable and accessible across partner organisations, preferably through fully compatible and integrated IT systems Gold Standard Framework, or an equivalent model, is in place in all GP practices and care homes Single assessment process is in place across health and social care (DH, 2004b) Named lead professional, or key worker, is identified in all care plans and communicated to all individuals and teams involved in the care of the person. This must also include carers and changes to the names of the lead professional (NICE, 2004:7) Preferred priorities for care/advance care planning are in use in all settings The privacy and dignity of people will be respected and maintained at all times and in all environments

Choice for people, their carers and families is important to ensure that individual needs are identified and an appropriate plan of care is agreed and delivered. The importance of choice and a rising expectation that choice is available will need to be included in service models for the future throughout the care pathway journey Wherever possible, in social care, individualised budgets should be offered to enable people to exercise their full choices in the social care services they require

Starting the conversation

Protocols for continuing healthcare funding are consistently and equitably applied The requirements of the Mental Capacity Act (MCA) (Department for Constitutional Affairs, 2005) need to be taken into consideration at all points of assessment and care planning and throughout care delivery Discussions regarding welfare rights referral will take place as early as possible People who choose to, have a completed advance care planning in place that is timely and regularly reviewed (Henry C & Seymour, J 2007) Protocols for assessment of the persons needs in relation to specialist equipment are in place

Quality standard Ensure that discussions with individuals regarding end of life issues are undertaken by appropriately trained staff (NICE, 2004). The principles for implementation are: All senior healthcare professionals will be able to demonstrate that they have a level of competence to communicate complex information to the person and their families, involving them in clinical decisions and offering choice (DH, 2007a:72) Health and social care professionals are competent in communication skills related to end of life advance care planning in all life limiting disease groups. This may include discussions regarding tissue and organ donation (DH, 2005a) Professionals caring for people with long term conditions need to recognise and discuss end of life care issues with the person/family
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Co-ordination of Care

the community if required by medical and nursing services (NICE, 2004:10) Rapid response services available to meet the changing needs of the person and their carers

Quality standard All organisations providing end of life care must implement processes to ensure effective interprofessional communication. Mechanisms need to be established to ensure that each person approaching end of life receives co-ordinated care in accordance with the care plan available 24 hours a day, seven days a week throughout the disease trajectory (Richards, 2007; NICE, 2004:7). The principles for implementation are:

Multi-disciplinary teams for health and social care provide generalist and specialist palliative care, with integrated models of care delivery and regular team meetings that assess the care needs of the individual and their family/carer(s) Access to specialist spiritual, psychological, social assessment and rehabilitation services for all life-limiting illnesses

Review

Supportive care register is in place and accessible across all sectors 24 hours a day, seven days a week. (Thomas & Sawkins, 2007) The North West end of life model is used for identifying significant points in the persons journey and used as a lever for action Health and social care staff providing day to day care for the person must be at the core of end of life services (NICE, 2004) The persons progression through the end of life care model is communicated across all sectors and within the wider multi-disciplinary team The persons journey and pathway of care is seamless across all organisations A single point of contact, which can deal with clinical and social care for patients and provide a consistent point of contact for information and reassurance 24 hours a day, seven days a week (NHS Northwest, 2007b)

Quality standard Integrated multi-disciplinary team meetings are held involving all relevant staff across sectors, with the outcome of the discussions recorded and communicated to all relevant staff, the person and their family. This would be at significant trigger points along the end of life care model, including diagnosis and disease progression (NICE, 2004:41) The principles for implementation are: Monthly integrated multi-disciplinary meetings across all care settings take place Changes in the persons phase colour coding status, as per the North West end of life care model are communicated across providers using a standardised format, for example an out of hours handover form Services are available to meet the changing needs of the person and their family as identified by the review process, for example rapid response teams being available in the community Consideration of transfer of care for teenagers must be considered as part of the reviews, where appropriate

Integrated Service Delivery

Quality standard To enable choice for the dying, PCTs, social and healthcare commissioners must review the availability and quality of end of life care services in different care settings, with direction and support from the North West SHA. This will take account of current guidance and the work undertaken to develop baseline reviews of end of life service provision (Richards, 2007). The principles for implementation are: Clearly identified leadership at operational level for end of life care Individualised information is effectively transferred in a timely manner between organisations and sectors, ideally by fully integrated and compatible IT systems Protocols for managing people coming to the end of life are in place across all service providers, including a Do not attempt to resuscitate policy Rapid discharge pathways are in place for people in acute care who wish to die at home; including access to equipment without undue delay, within 24 to 48 hours; two hours for ambulance transfer of dying person for rapid discharge. This will require the development of systems and processes (NICE, 2004) Domiciliary symptom control treatments are provided in

Last Days of Life

Quality standard Choice of place of care and death and quality of care will be measured and monitored by PCTs and the Healthcare Commission. The principles for implementation are: There is a 10% reduction in hospital deaths through enhanced community services by 2012 Access to appropriate services in the community setting, such as Crossroads, Marie Curie nursing, night sitting from charitable and voluntary sectors Liverpool care pathway for the dying should be used in all locations to identify and address the needs of all people who are dying (NICE, 2004:11) Use of prognostic indicator guidance criteria for use of the Liverpool care pathway and multi-disciplinary team discussion is evident when diagnosing dying Spiritual/psychological support services should be available 24 hours a day, seven days a week
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Anticipatory prescribing for common symptoms is available in the community with access to equipment and medication 24/7 without undue delay (NICE, 2004: 10) People die where they choose whenever possible and with dignity. This will be evidenced by an increasing uptake and audit of the preferred priorities for care document across sectors, as well as a reduction in unnecessary hospital admissions in the dying phase Further discussion regarding tissue/organ donation with the person and their carers in a sensitive manner, accommodating the wishes of the person, their family and their carers There is an assurance that at the time of the persons death, staff will treat the person and their family with care, sensitivity and respect (DH, 2003b:11)

The principles for implementation are: Provider organisations should nominate a lead person to oversee the development and implementation of services that specifically focus on the needs of families and carers during the persons life and in bereavement, which reflect cultural sensitivities (NICE, 2004:12-13) All carers are offered an independent carers assessment Equitable and timely access to welfare rights across all sectors Independent support for family and carers from specialist services such as hospices, specialist palliative care teams Timely and equitable access to carer support schemes at any point during end of life care Appropriate, timely and accessible information is readily available, and meets the need of a diverse population, taking into consideration issues including physical and learning disability and ethnicity Support for carers in line with protocol when organ donation has been agreed

Care after Death

Quality standard There is an integrated approach to care after death by the implementation of protocols and guidelines in all appropriate care settings including access to bereavement support services. The principles for implementation are: The care after death section of the Liverpool care pathway to be used for all deaths, or other equivalent locally developed protocols Protocols and guidelines agreed regarding the involvement of the police and coroners for out of hours expected deaths, for example nurse verification of expected death Viewing arrangements in place for families of the deceased both on the hospital ward, in the care home and in the mortuary. This needs to take into account individual beliefs, culture, religion and values (DH, 2006a) Integrated, co-ordinated and individualised response to the bereavement needs of those affected by the death of an individual (DH, 2005b) Where organ donation has been identified, protocols are followed as necessary with tact and sensitivity The management of sudden death may require additional support for both the families and staff involved, for example when there has been neonatal death or suicide Special attention and services may be required for children who lose parents (see childrens pathway)

Employer organisations have policies in place to enable their staff who are carers to work and to care Quality standard The North West SHA should work closely with services to determine and meet workforce requirements and to ensure education and training programmes are available for all health and social care staff (NICE, 2004:13) Provider organisations should identify staff that may benefit from training and should facilitate their participation in training and ongoing development. Individual practitioners should ensure they have the knowledge and skills required for the roles they undertake within the spectrum of end of life care (NICE, 2004:14)

Workforce and Education


The workforce, education and training strategy is central to achieving high standards of care. It is needed both nationally and regionally to ensure end of life care knowledge, skills and attitudes are incorporated in to pre and post registration training for all professions involved in end of life care. A competency based approach to learning is needed using the clinical pathway and model advocated in this report for all clinical and non clinical staff, including induction programmes for new staff. The North West has identified three levels of involvement in the end of life care service that will be used to develop an education strategy for the future. Consideration should be given to mandatory requirements, in particular for communications skills. There are many areas of good practice in the region to build upon, and these include shared learning across health and social care and shared learning amongst different staff groups. There is a need to identify dedicated resources that will enable educators to provide the education and organisations to release the staff to undertake the training. A longer term strategic approach between professional bodies, commissioners and providers is needed.

Support for Carers

Quality standard Carers should have their needs assessed independently, with access to appropriate and timely verbal and written information, including access to practical help and welfare rights (Great Britain, 2004)

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The principles for implementation are: The SHA will be required to develop an education strategy that is competency based, for all regulated professionals, with pre and post registration training on end of life care. Education is also required for previously under recognised groups such as prison staff, paramedics, allied health professional and care homes All pre registration courses for health and social care workers should include end of life care. Professional bodies should have core curricula for end of life care incorporated in their training programmes All staff involved in the delivery of services must receive training on end of life care, such as porters, cleaners, receptionists and so on Workforce planning and future requirements based on needs assessment should be reflected in the commissioning strategy. This should include the development of specialist roles, including childrens services, with reference to the contribution of health care scientists Education/training for the person and their carers that responds to changing needs across the spectrum of the end of life care model encouraging self care and family care Equitable access to funding and training budgets for staff across provider organisations working within end of life care Equitable procedures in place to ensure staff can be released to continuously update their skills and knowledge, and meet their continuing professional development requirements Mandatory and fully funded appropriate end of life care education for all health and social care professionals Communication skills training should be mandatory for all staff and there should be advanced communications skills training for staff in specialist roles Training for the MCA is required for all staff Assessment skills in relation to psychological and spiritual needs should be part of the education and training strategy for all staff Community teams are identified as key partners in enabling people to die at home, including care homes Quality standard The importance of research, evidence based practice, audit and innovative ways of working are vital to ensure staff and organisations constantly keep up to date with best practice but also support a culture of continuous improvement. The principles for implementation are: The development of a network to support innovation in practice is recommended. The network would: Include all staff working in end of life care, the person, carers, educationalists, and academics from all sectors, including NHS, social care, independent sector, charitable organisations, voluntary organisations, police, ambulance Review practice, develop new ideas and test out new models, new knowledge and/or technology Create the opportunity for the development of a community of practitioners as spearhead leaders in the world of end of life care
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The SHA should have a defined strategy for research and development for end of life care

Measurement and Information Systems


Quality standards Effective, timely and relevant end of life care information should be available to individuals, commissioners, clinicians, service providers and policy makers in order for commissioners to monitor the effective delivery of services. Measurable outcomes based on quality standards are crucial. The North West SHA should agree to collect a minimum data set on each of its service users for end of life care across the North West (DH, 2004a:18) The principles for implementation are: Quality standards are to be developed nationally and adopted across the North West Effective peer review of end of life care services across all sectors to be undertaken Systems in place to audit the uptake and implementation of end of life care tools and the quality of care delivered Quality standards for end of life care assessed by the regulators, the Healthcare Commission, and Commission for Social Care Inspection Mandatory collection of national minimum data set for palliative care Mandatory bi-annual national care of the dying audit across all providers of end of life care Surveys of bereaved relatives and views of care using the VOICES questionnaire Development of compatible integrated information systems that enabless measurement/audit of end of life care services Quality standard End of life care commissioning strategies are supported by the required resources to enable service provision and development based on assessed needs and quality standards.

Funding
The resources required for end of life care need to be developed in partnership with the key stakeholders to maximise the opportunities that partnership working provides. The baseline reviews and this report will be used with our partners in local authority, the PCTs and the SHA to identify the future strategy and resources that are needed to deliver end of life care services. The principles for implementation are: A service specification with service level agreement to support end of life care across hospital, hospice and community settings Equitable and timely access to continuing healthcare funding Funding to support substantive posts for end of life care facilitators/leads across all sectors Level of funding is agreed for staff training and development across provider organisations of end of life care

Increase the end of life care component within the Quality Outcomes Framework Funding mechanism in place to support third sector services Leadership within organisations Leadership is needed at all levels to provide direction, motivation, drive, support and to demonstrate a commitment to staff working in this area. In order to deliver cross-organisational models of service, joint developments such as co-ordination and education/training roles with dedicated time and responsibilities for end of life care such as coordination roles are needed to deliver this agenda. Communication strategy The implications of delivering a first class end of life care service will require as a priority a communication strategy that puts the person and carers at the centre of the system and simplifies communication across all organisations involved.

fully shared with all relevant staff and accessible 24 hours a day, seven days a week Fully integrated and co-ordinated services should be available across organisations with 24/7 access to specialist palliative care services. This should be underpinned by a single point of access for the person and their carers, including documented evidence of the use of supportive care registers There should be in place evidence of comprehensive holistic assessment that clearly meets the persons individual needs. The assessment should be based on the North West end of life care model and standards Support should be provided for carers of all ages during the persons life and during the bereavement phase Workforce development, with mandatory training and education in end of life care and a particular emphasis on effective and sensitive communication, should be provided for all relevant staff, both clinical and non clinical, on a continuing basis. This is fundamental to ensuring quality in end of life care and must be a key feature in local delivery plans A strategy should be developed by the SHA, PCTs and the local authority to support a culture of change in end of life care, incorporating research, innovation and service improvement A financial investment programme should be identified to support the delivery of the health and social care commissioning strategy

Achieving the Quality Standards


To achieve these quality standards, the following actions must be taken: ACTION 1. Communicate report through web site, networks and providers) 2. Influence chief executive officers, commissioners and other key stakeholders 3. North West National Palliative Care conference 4. National strategy launch 5. Pilot standards 6. Implement standards based commissioning framework 7. Establish a North West partnership board for end of life care TIMEFRAME March 2008

First draft July 2008 July 2008 July 2008 September 2008 April 2009 April 2008

Key Recommendations
A robust integrated commissioning framework based on the North West end of life care model should be developed across health, social care, voluntary, charitable and independent sectors, with identified strategic leadership within each PCT. This framework should enable a 10% reduction in hospital deaths by 2012 Quality standards with associated measures should be developed to support self-assessment based on the North West end of life care strategy by August 2008 A public campaign should be established to raise awareness about end of life care, resulting in a more open conversation within society that also engages peoples views about death and dying The NHS North West should continue to build on the current success of implementation of the national end of life care tools - GSF, LCP, PPC Advance care planning should be undertaken in all sectors of care, preferably electronically based. A persons preferences and choices should be identified,
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Appendix 1
Cause of Death Graphs

Cause of Death: Cumbria & Lancashire 2006

Cause of Death: Cheshire & Merseyside 2006

Cause of Death: Greater Manchester 2006

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Appendix 2
This section looks at cross cutting themes that have been discussed with chairs and facilitators from other clinical pathway groups. Urgent care Are out of hours services co-terminus or separate? We need an integrated IT system Long term conditions When and how do we start the conversation? Children Is joint working needed? Whos going to do it? Is end of life for children the responsibility of end of life care or childrens? Staying healthy We need to develop a social marketing model for end of life care Birth Bereavement support commissioned across health community Planned care We need integration and to recognising overlapping prognostic indicators Integrated IT Mental health Identified lead for end of life within psychiatric services Integrate end of life into dementia and learning difficulty cases Do not assume staff have end of life skills Below are the issues raised by the other clinical pathway groups in relation to end of life care. Urgent care Where does end of life care start? How do we know about the care package when patient has an acute episode? This considered issues such as is acute intervention appropriate? Long term conditions When does end of life care start? Think about patients living with COPD/heart failure who may need palliative care for two years before they die Access to enhanced care for patients who have non malignant disease Access to specific services for example respiratory management at home for people with motor neurone disease and multiple sclerosis At what point with long term conditions do we plan/discuss end of life care? Address provision to respite to support carers through long term conditions/end of life Integration across long term conditions and palliative care. Need for psychological support and mental health care Adaptations to home environment should be given priority for palliative care patients Urgent access needed for specialised equipment, including at weekends. Contact details should be part of care plan Different time spans for long term conditions and end of life care, for example with conditions like motor neurone disease and dementia
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Involve patients at time of terminal diagnosis being made and have open dialogue Palliative care in care home establishments to prevent avoidable hospital admissions and support patient preferences Guarantee equitable service to all patients living with palliative disease Children Maintain life for children until death, supporting them to take part in normal activities like, school, play, and socialising Maintain normality until death Planned death versus unplanned Children are individuals and have individual needs, dependent on their stage of development Whos responsible for this area? The childrens clinical group or end of life clinical group? Staying healthy Develop a social marketing strategy for end of life care Staff believing in and signposting staying healthy services Mental health - compressing morbidity choice - improving quality of death Employers/companies should be supportive Development of bereavement counselling as a standard intervention for family members All staff should be trained and confident to deliver end of life care Birth Bereavement support for intrauterine deaths, stillbirths, termination of pregnancy and neonatal deaths Bereavement care needs resourcing and skills Counselling for termination of pregnancy and early pregnancy loss Health visitors need training in mental health issues/end of life care Planned care Palliative care and who delivers to all ages? Childrens issues Working with end of life services, for example undertakers Supportive and palliative care guidance, involvement of wider multi-disciplinary team and access to equipment When does end of life care start? Mental health End of life care for those who lack capacity, such as those with learning disabilities, dementia and so on Advanced directives - capacity to consent - do not assume that mental health services have the necessary skills End of life care needs psychological component Suicide and the effect on bereaved including work colleagues Psychological and psychiatric links to end of life care. Someone from this area should take the lead on end of life care issues for mental health Mental health services need access to end of life care services, including skills around managing the bereaved

Appendix 3
Patient Experience Case study 1 Mary was a 71 year old lady with learning disabilities who lived in sheltered accommodation with another lady with learning disabilities called Elsie. The two were very independent, requiring minimal help from social services carers. Mary was diagnosed with inoperable lung cancer and was then referred to the learning disabilities nursing service to help support her through the initial diagnosis. Mary had an extreme fear of hospitals and health professionals, but she did accept the learning disability nurse. The nurse helped to work through the diagnosis and prognosis with Mary, who then expressed a wish not to go to hospital. A PPC document was completed. Mary had good support from both health and social care staff, who communicated regularly about her care. The learning disability nurse took on the role of health facilitator and supported Mary through the difficult experience of coming to terms with her diagnosis and prognosis. The nurse acted as the key worker and co-ordinated care effectively, eventually getting Mary to accept other professionals such as the district nurse. The learning disability nurse ensured that Mary had good access to generalist and specialist palliative care services and gave appropriate information in a way that was understandable to the client. Because Mary had a PPC document, this helped facilitate her wishes about where she wanted to die. To illustrate this, at one point in her illness she developed hypercalcaemia and agreed to go to hospital for treatment. While she was in she developed a chest infection and the ward staff wanted to keep Mary in, but because she had taken her PPC document in with her she was able to say she wanted to go home. She was transferred home and died very peacefully with support from all involved in her care. The completion of the PPC with Mary and the learning disability nurse allowed Mary to express her fears and concerns and have her wishes met. It also meant that all those involved in her care understood what she wanted. Mary received support throughout her disease from both health and social care staff and this was aided by having the nurse as a key worker, introducing timely and appropriate discussions and facilitating the implementation of the PPC document with Mary. She also ensured that effective communication took place. This also gave Mary more confidence in her team and she died at home, where she wanted to be. Case study 2 AB is 72 and was diagnosed with non small cell carcinoma of the lung. Her husband was 74 and had two previous strokes and she was his main carer. Her case and treatment plan were discussed at the cardio thoracic centre (CTC) multi-disciplinary team meeting in the morning and, later that day, the patient was seen and told her diagnosis. She then saw the oncology team, who discussed treatment options of combined chemoradiotherapy. She was noted to have pain in her chest and had been concerned about managing her husbands care needs. She was finding it more difficult to cook. She was offered the chance to see the specialist palliative care team at that time for symptom management, which she did. The senior occupational therapist and social worker arranged a joint home visit for the following week and she was linked into the hospice for support. The multi-disciplinary team was able to plan effectively, with input from appropriate professionals. There was good communication between healthcare professionals and patient. Timely referral to specialist palliative care team (SPCT) was due to them being part of the multidisciplinary team. There was also input from hospital palliative care, occupational therapist and social worker, who were able to assess patient and husband in their own home surroundings. The palliative care specialist was contracted to work at the hospice and the CTC and this provided close partnership working. There was early referral to hospices services and community SPCT, which were available when required. This cross-boundary working enabled seamless care and there was multi-professional support for patient and spouse, which helped with advance care planning. The patient was seen by the specialist palliative care physician who was able to identify the main concerns, manage symptoms appropriately and link into wider SPCT and hospice services. The patient and her husband were seen at home by the occupational therapist and social worker. There was a good level of communication between all health care professionals/agencies involved and good communication with patient in giving of significant information and advance care planning in a sensitive and supportive manner.

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Case study 3 C was a 47 year old woman with motor neurone disease. She lived with her husband, and teenage daughter and son. She was diagnosed in October 2006 following a fall due to lower limb weakness. She refused to accept the diagnosis and discharged herself from the neurologists care. She had been seen previously by an orthopaedic surgeon who had suggested surgery for a prolapsed disc and so she sought alternative therapies for her perceived back problem for several months before being referred to hospice outreach therapy team by the district nurse in May 2007. The patient and her family were seen at home by the occupational therapist from the outreach team and the consultant in palliative medicine to identify main concerns. There was considerable anger within the family following uncertainty around diagnosis and subsequent reluctance to engage with neurological services or to accept life threatening nature of condition. C was confined to living upstairs due to paraplegia and refusal to accept downstairs adaptations. Her husband carried her up and downstairs, her children were unaware of diagnosis and C was still in denial and requesting treatment to improve power in her legs. C said if she became quadriplegic she would commit suicide. From May to August, C was seen in her own home by the occupational therapist, physiotherapist and complementary therapist each week, developing therapeutic relationships and increasing acceptance of and confidence in palliative care services. The hospice physician carried out several domiciliary visits to monitor pain control and other symptom management. C gradually accepted reflexology and acupuncture for back pain and agreed to referral to a family support worker to begin to address issues with the children. Relaxation techniques taught C to alleviate panic attacks and her husband accessed carer support group at hospice. The hospice occupational therapist worked in partnership with social services occupational therapist and the motor neurone disease association to facilitate timely provision of equipment. Gradually, C began to accept the diagnosis and began to talk about the prognosis and her fears about dying. She was afraid of dying at home and the nature of death. She expressed suicidal thoughts, though realised she would not act on these because of her family. She was low in mood as reality of situation became clearer. In September, C agreed to admission to inpatient palliative care for symptom review and respite for her family. Prior to admission, she was able to tell her son about her diagnosis. On admission to palliative care unit, C was extremely anxious, but this was relieved by cross boundary working by the physiotherapist, occupational therapist and complementary therapist from the hospice and she was able to continue therapies on the ward by people she already knew. Her husband was still able to access the hospice carer support group, the children were being seen by a family support worker and C was helped to prepare letters for her husband and children.

C was well supported by all staff on the unit and her symptoms were well managed. She died peacefully three weeks after admission and support was given to her family throughout their bereavement. This case illustrates the benefits of timely referral by the district nurse to the hospice outreach team the nurse was aware of the home treatment service because of training she had received from the specialist palliative care team, funded by the Department of Health. Throughout, there was close partnership working between all agencies, with initial support in home surroundings and then a specialist in-patient bed when required. Cross boundary working ensured seamless care and there was multi-professional support for all the family throughout Cs illness and their bereavement.

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Appendix 4
North West Examples of Innovative Practice The following examples have been taken from Building of Firm Foundations - Improving end of life care in care homes: examples of innovative practice, a report that was produced by The National Council for Palliative Care. For more information, visit www.endoflifecare.nhs.uk/eolc/eolcpublications or www.endoflifecareforadults.nhs.uk Greater Manchester Palliative care education and information website in Manchester A new palliative care website has been set up in Manchester to provide 24-hour information and educational resources The site includes tutorials, local contact details, referral forms and a bulletin board Cancer network guidelines for bereavement care in Greater Manchester and Cheshire The Greater Manchester and Cheshire network has produced new guidelines for bereavement care The guidelines have been sent to all chief executives of hospices and trusts Bereavement is now on local strategy groups agenda and has been included in local delivery plans Introducing the Gold Standards Framework and Liverpool Care Pathway to health care professionals in Tameside and Glossop PCT Tameside and Glossop PCT has introduced the Gold Standards Framework and Liverpool care pathway to most practices, all district nursing services and two nursing homes in the last 18 months Early results suggest this has cut hospital admissions and increased patient choice about end of life care Using end of life care tools in the nursing care home - a developing model for education and sustainability in Salford and Trafford PCTs Facilitators in Salford and Trafford PCTs are supporting staff in nursing care homes to use end of life care tools So far, staff in eight homes have been trained with another 22 due to follow by 2012 Staff who have had the training feel more confident about advanced care planning and symptom control Respite palliative homecare teams in Salford and Trafford Respite palliative care teams in Salford and Trafford have ensured that 80% of those visited are able to die at home Before the teams were established, only 21% of cancer patients were dying at home The teams now provide care for patients and carers during the last year of life Increased uptake among non-cancer patients is now a priority Improving end of life care for individuals with dementia in the North West Five pilot sites in the North West are introducing the Gold Standards Framework for people with dementia
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It has not always been possible to persuade GPs to prescribe in advance Following discussion and the use of the end of life care tools, staff have learnt that each person has their own beliefs and wishes and these should be respected even when different from their own Using end of life care tools in the care/nursing home a developing model for education and sustainability A project was set up to provide staff working in care homes (nursing), with the skills and support to effectively utilise end of life care tool, incorporating a model of sustainability Facilitators within Salford and Trafford PCTs supported three care homes to take part in an end of life care pilot study in 2006 and through a lessons learned approach, three key themes have emerged: - Motivated and skilled change agents are needed in order to sustain the effective use of end of life care tools - Views of care homes staff support the notion that the three end of life care tools compliment each other - A model of education and sustainability is required that will ensure best use of time and resources End of life care and the ambulance service - an integrated approach in North West Ambulance Service NHS Trust Ambulance staff in Oldham are testing out a standardised DNAR form for palliative care patients The decision not to resuscitate could be applied where the patient has indicated this to be their wish; appropriate treatment options have already been exhausted; or where the quality of life following resuscitation would be unacceptable

Cheshire and Merseyside Meet and greet supported discharge scheme for palliative patients Marie Curie has developed a meet and greet supported discharge scheme for palliative care patients returning home The nurse remains with the patient for an agreed length of time before the district nurse takes over The scheme has proved popular with both health care professionals and carers Using a joint organisation approach to facilitate the implementation of end of life tools in Cheshire Hospices education programme An education body is working in partnership with the local PCT to increase the use of end of life tools among care staff in Cheshire The aim is to increase use by a minimum of 50% and to match or exceed national figures Developing a LINK nurse scheme to improve end of life care A LINK nurse system was developed for 27 care/nursing homes in West Lancashire, Southport and Formby The aim is to develop closer links with

care/nursing homes, increase staff confidence and extend the use of the care pathway for the dying to all expected deaths East Cheshire Crossroads Macmillan palliative care service East Cheshire Crossroads Macmillan palliative care service is helping carers to ensure their relatives are able to die at home if they wish to The team of 10 trained support workers offers a 9am to 4.30pm service every week day and aims to respond to all referrals within 36 hours Future plans include extending the service to children and people with dementia and offering overnight respite breaks and some weekend cover Cumbria and Lancashire Introduction of end of life care tools to improve care at Risedale Estates All Risedale Estates homes implemented the GSF, LCP and PPC tools Residents say they feel more in control; staff are more confident and knowledgeable The Liverpool care pathway has enabled nurses to discontinue inappropriate procedures in the last 48 hours of life and concentrate on ensuring the last hours are comfortable and peaceful for residents and families Educational approach to care/nursing homes in Lancashire and South Cumbria Many district nurses blocked difficult conversations with dying patients A free interactive workshop is giving staff new skills and greater confidence Model of care covering palliative patients health and social care needs in Lancashire A seamless health and social care service now operates in East Lancashire to help all palliative care patients who are expected to die in the next six months Since the service started, 70% of those referred have died at home and only 13% in hospital North Cumbria Palliative Care website in North Cumbria Palliative care specialists in North Cumbria have developed a website to help isolated GPs offer support to people dying at home More people die at home in North Cumbria than nationally The website has proved extremely popular. Developing a network of palliative care link workers in care homes and domiciliary care in Morecambe Bay A network of palliative care link workers has been established in care homes and domiciliary care agencies across Lancaster. The aim is to share information about best practice in end of life care with generic staff and to develop closer links between these care workers and the local palliative care team. This initiative has been led by Lancashire County Council Adult and Community Services Directorate and the St Johns Hospice in Lancaster. ACP CPD CSCI CTC DH EOLC GSF GP HCC IT ICM LA LCP LD LINKS MCA MDT MND NICE NHS NW -

Appendix 5
Glossary of Terms Advance Care Planning Continuing Professional Development Commission for Social Care Inspection Cardio Thoracic Centre Department of Health End of Life Care Gold Standards Framework General Practitioner Health Care Commission Information Technology Market Research Company Local Authority Liverpool Care Pathway Learning Disability Similar to patient advisory service Mental Capacity Act Multi Disciplinary Team Motor Neurone Disease National Institute for Clinical Excellence National Health Service North West

Organisations - Care Homes, Hospices, Hospitals, PCTs, Independent and Voluntary sectors and charitable organisations OT PCT Persons/ Peoples PPC QOF SHA SLA SPCTs Occupational Therapist Primary Care Trust Client, Patient, Person with illness and service user Preferred Priorities for Care Quality Outcomes Framework Strategic Health Authority Service Level Agreement Specialist Palliative Care Teams

Stakeholders - Staff, patients, carers and so on VOICES (questionnaire)

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Appendix 6
End of Life Care Reference Group Members Name Jan Ablett Sue Ashcroft - Simpson Joanna Bayly Rita Boylan Melissa Bradshaw Barbara Burkey Shan Charnock Hilary Compston Michael Connolly Elaine Cox Julie Foster John Gorman Precious Handongwe Patricia Hewitt Isabel Hill Mary Hill Simone Isaacs Roisin Kavanagh Pamela Kehoe Lynne Kenway Wendy Makin Blessy Oomen Nick Sayer Christine Sutcliffe Liz Thomas Tracy Wild Alison McCarthy Alison Wilkinson Chris Shearin Role Clinical Psychologist, Palliative Care Admiral Nurse Team Leader Physiotherapist, Palliative Care Registered General Nurse Registered General Nurse Chair, Patient and Carer Group Qualified Assistant Practitioner Community Dementia Team Associate Director Cancer Network Macmillan Nurse Consultant Staff Nurse Mental Capacity Act Trainer/ Co-ordinator North West Hospital Chaplain Registered General Nurse Psychotherapist Occupational Therapist, Palliative Care Speech and Language Therapist Physiotherapist, Palliative Care Dietician, Palliative Care Admiral Nurse Physiotherapist, Palliative Care Palliative Care Support Team Registered General Nurse Consultant in Palliative Medicine Social Worker Area Manager, Welfare Rights Macmillan Lead Palliative Care Nurse Lead Cancer Nurse Clinical Nurse Specialist Palliative Care Policy & Knowledge Management & Implementation Lead Senior Commissioner (Leads on EOLC) David Waterman Barbara Downes Jan Vickers Jill Smith Nuala Roberts Siobhan Horton Consultant in Palliative Medicine Medical Director/Consultant in Palliative Medicine Nurse Consultant for Paediatric Palliative Care Clinical Nurse Specialist Palliative Care Heart Failure Specialist Nurse Director of Clinical Services Macmillan Team The Royal Liverpool Childrens NHS Trust Royal Bolton Hospital Royal Bolton Hospital St Lukes - Hospice Winsford Cheshire Stockport PCT Bolton Hospice Royal Liverpool and Broadgreen University Hospitals Trust Hyde Nursing Home Greater Manchester Rossendale Hospice Pennine Acute Hospitals NHS Trust Ashton Leigh and Wigan PCT Pennine Acute Hospitals NHS Trust Pennine Acute Hospitals NHS Trust Manchester Mental Health & Social Care Trust Pennine Acute Hospitals NHS Trust Christie Hospital NHS Foundation Trust, Manchester Hyde Nursing Home Greater Manchester St. Catherines Hospice, Preston Marie Curie Cancer Care Lancashire Welfare Rights Pennine Acute Hospitals NHS Trust Pennine Acute Hospitals NHS Trust Royal Bolton Hospital Cumbria PCT Greater Manchester & Cheshire Cancer Network Macmillan Team Wythenshawe Hospital The Meadows Pennine Care NHS Trust East Lancashire PCT Organisations Marie Curie Cancer Care/ University of Liverpool Manchester Mental Health & Social Care Trust Woodlands Hospice, University Hospital Aintree Site, Liverpool The Fountains Nursing Home Greater Manchester Westwood Lodge Greater Manchester Merseyside and Cheshire Cancer Network Hyde Hospital Pennine Care NHS Trust

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Appendix 7
Schedule of meetings and outputs required (Shaded rows denote outputs/deliverables) Date and time 17 September 2007 6pm - 8pm, Birchwood, Warrington 18 September All day, Manchester 4 October All day, London October 24 October 30 October All day, Haydock racecourse 30 October, London By mid November (to be arranged by Clinical pathway groups) 21 & 22 November 2 days, ExCel, London 27 November All day, JJB Stadium 29 November All day, Reebok Stadium 29 November, Tickled Trout 6 December 14 December 12 December, Reebok Stadium CEO forum for NHS review DH filming care pathways in North West First draft output from clinical groups Stakeholder event with voluntary/charitable sector, local authorities and IS 19 December 15 January 2008 All day 17 January 2008 24 January End January 12 February All day February (date tbc) Programme steering board Clinical pathway groups meeting Lord Darzi and chair of chairs meeting National and NW 2nd deliberative event Second draft output from clinical groups Clinical pathway groups meeting Second National chairs and facilitators meeting Early/mid February March/April Final output from clinical groups Clinical pathway groups reports collated and publication of SHA vision 19 March 21 May June Programme steering board Programme steering board Final report published constitutional event NW NW National/NW NW NW NW NW National National/NW NW NW National NW National NW NW Clinical pathway groups meeting NW NW Clinical Congress NW Clinical pathway groups meeting National Clinical Summit NW National Planning meeting with DH National Chairs and facilitators meeting with Ara Darzi National Interim Review published Programme steering board Clinical pathway groups meeting National NW NW National National and NW deliberative event NW Purpose NW Chairs and facilitators meeting National or regional NW

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Appendix 8
End of life care clinical pathway group members:

NAME Adrienne Brownrigg Anita Roberts Anthony Reynolds Bernie Hardman Carol Turner Carole Mula

ROLE End of Life Care Lead - Cumbria & Lancashire Learning & Teaching Lead Chaplain MacMillan Development Manager (North West Area) Lead Cancer Nurse Nurse Consultant in Palliative Care

ORGANISATION NHS Northwest Marie Curie Palliative Care Institute Leigh/Wigan Macmillan Blackpool, Fylde & Wyre Christie FT/ Manchester PCT NHS North West Department of Health BMA Marie Curie Cancer Care Oldham Council Adult & Community Service Bolton Trust Halton & St Helens PCT Univ. of Liverpool St John's Hospice NHS Northwest Lancashire Teaching NHS Northwest Manchester PCT Bolton Trust Salford Royal Trust

Chris Mullen (SHA Lead) Associate Director Workforce Strategy Claire Henry Craig Frame Diane Barker Dorothy Phillips End of Life Care, National Programme Director GP North West Area Mgr, Marie Curie Cancer Care Head of Service for Services for Older People Assessment, Care Management and Support Fiona Murphy Hong Tseung John Ellershaw (Chair) Julie Gorry Kim Wrigley Louise Forman Sue McAinsh Petula Chatterjee Ron Hopkins Stephanie Gomm (Deputy Chair) Steve Barnard Tilley Reid Tom Fairclough Trish Bennett Yvonne Mpofu Paramedic, Head of Clin. Governance Occupational Therapist, Clinical Manager Commissioning Director of Nursing RGN Bereavement Donor Co-ordinator GP National Clinical Lead for Spec Palliative Care National Council Palliative Care (North West Area) End of Life Care Lead - Greater Manchester Consultant Palliative Care Project Manager - ELC GP Medical Director Consultant in Palliative Care Co-Network Chair

NWAS Clinical Manager, Woodlands Hospice Knowsley PCT Liverpool PCT The Lakes Care Home, Greater Manchester

Appendix 9
References Department for Constitutional Affairs (2005) Mental Capacity Act 2005. Chapter 9. London: The Stationery Office. http://opsi.gov.uk/ACTS/acts2005/ukpga_20050009_en_1 (Accessed 21 February 2008) Department of Health (2003a) Building on the best: Choice, responsiveness and equity in the NHS. CM 6079. London: The Stationery Office Department of Health (2003b) Care homes for older people: national minimum standards and the care homes regulations. 3rd ed. Gateway Reference 2003. London: The Stationery Office http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_4005819 (Accessed 21 February 2008) Department of Health (2004a) Manual for cancer services 2004. London: The Stationery Office. http://www.dh.gov.uk/en/Healthcare/NationalService Frameworks/Cancer/DH_4135595 (Accessed 21 February 2008) Department of Health (2004b) The single assessment process: guidance for local implementation. Gateway Reference 2002. London: The Stationery Office. http://www.dh.gov.uk/en/Publicationsandstatistics Publications/PublicationsPolicyAndGuidance/DH_4008389 (Accessed 21 February 2008) Department of Health (2005a) National Service Framework for renal services part two: chronic kidney disease, acute renal failure and end of life care. London: The Stationery Office
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Department of Health (2005b) When a patient dies: advice on developing bereavement services in the NHS. Gateway Reference 5578. London: The Stationery Office. http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyandGuidance/DH_4122191 (Accessed 21 February 2008) Department of Health (2006a) Care and respect in death: good practice guidance for NHS mortuary staff. Gateway Reference 6831. London: The Stationery Office. http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_4137969 (Accessed 21 February 2008) Department of Health (2006b) Standards for better health. Gateway Reference 6405. London: The Stationery Office Department of Health (2007a) Cancer reform strategy. Gateway Reference 9092. London: The Stationery Office Department of Health (2007b) Further developments in measuring quality adjusted healthcare output. London: The Stationery Office Department of Health (2007c) Operating Framework 2007/08: PCT baseline review of services for end of life care. Gateway Reference 8116. London: Department of Health. http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_074108 (Accessed 21 February 2008) Department of Health (2007d) World class commissioning: vision. Gateway Reference 8754. London: The Stationery Office Feinemann, J (2006) How to have a good death. London: Dorling Kindersley Great Britain. Carers (Equal Opportunities) Act 2004. Chapter 15. London: The Stationery Office Henry, C. & Seymour, J. (2007) Advance care planning: a guide for health and social care staff. Gateway Reference 7793. London: The Stationery Office Higginson, I.J. (2003) Priorities and preferences for end of life care in England, Wales and Scotland. London: NCHSPCS International Working Group on Death, Dying & Bereavement (2005) Charter for the normalisation of dying, death and loss: draft statement Mortality 10 (2) pp. 157-161 Jones, K. & Bayliss, C. (2007) Integrated NHS and social care palliative care at home In: Department of Health End of Life Care supporting information, data and evidence September 2007: working draft for clinical chairs version 1.0. London: Department of Health. Karen.jones@knowsley.nhs.uk carole.bayliss@knowsley.gov.uk Kellehear, A. (2005) Compassionate cities. London: Routledge Lancashire & South Cumbria Cancer Network (n/d) The preferred place of care plan and why it was developed The preferred place of care plan and why it was developed http://www.cancerlancashire.org.uk/ppc.html (Accessed 20 February 2008)

Marie Curie Cancer Care (2008) Delivering choice programme Delivering choice programme. http://www.mariecurie.org.uk/forhealthcareprofessionals/ deliveringchoiceprogramme/ (Accessed 21 February 2008) Marie Curie Palliative Care Institute Liverpool (2007) About the LCP Liverpool Care Pathway for the Dying Patient (LCP). http://www.mcpcil.org.uk/liverpool_care_pathway (Accessed 21 February 2008) National Health Service End of Life Care Programme (2005) The Gold Standards Framework: a programme for community palliative care The Gold Standards Framework. http://www.goldstandardsframework.nhs.uk (Accessed 20 February 2008) National Health Service End of Life Care Programme (2007) Making change happen: examples of innovative practice Improving End of Life Care for Adults. http://www.endoflifecareforadults.nhs.uk (Accessed 20 Februrary 2008) National Health Service North Wwest (2007a) National and North West Deliberative Event. Manchester. (18 September 2007) National Health Service North Wwest (2007b) Stakeholder engagement event. Reebok Stadium, Bolton. (12 December 2007) National Institute for Clinical Excellence (2004) Improving supportive and palliative care for adults with cancer: the manual. London: NICE Opinion Leader Research (2006) Your health, your care, your say research report. London: Department of Health. http://www.dh.gov.uk/en/Publicationsandstatistics Publications/PublicationsPolicyAndGuidance/DH_4127357 (Accessed 21 February 2008) Richards, M. (2007) End of life care strategy for adults emerging themes: paper from the end of life care strategy advisory board to SHAs workstream leads. London: Department of Health. http://www.networks.nhs.uk/uploads/07/10/eolc_advisory _board_paper_emerging_themes_051007.pdf (Accessed 20 February 2008) Thomas, K. & Sawkins, N. (2007) Gold Standards Framework in Care Homes programme: good practice guide. Walsall: GSF

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