GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

“The capacity to care gives life its deepest significance”
declared Pablo Casals, the virtuoso cello player and conductor. Today, aging “baby-boom” populations, financial globalisation and socio-ecological meltdown are straining to breakingpoint our ability to care for ourselves and for each other. Public service provision that gives every citizen, according to need, access to healthcare, social services, education and work opportunities, is the foundation of political stability in the modern European state. The expectations and expanding needs of 21st century citizens are outstripping traditional Public Sector institutional capacity to deliver, and overtaking the shrinking ability of Government to pay for it. Third sector1 social enterprise2 delivering public services in partnership with a reformed Public sector - is emerging as the ideal sustainable solution. Third sector social enterprise, also known as “the social economy”, is a way for non-profit organisations to use business solutions and the re-investment of entrepreneurial surpluses to satisfy unmet social needs, foster cultural development and address environmental problems.

Healthcare

is where the potential benefits of third sector social enterprise can be immediately opportune. Research7 by the World Health Organisation (WHO) shows the bulk of healthcare demand worldwide has irrevocably shifted from traditional curable short-term disease to incurable long-term conditions, as a result of modern life-styles and aging populations. Hence, the dominant focus of care must change from “cure” to “prevention and quality of life”, with its locus shifting from the acute specialised hospital to the home and community setting, becoming more patient and family centred, and more holistic - where both biomedical and psychosocial care is provided in an integrated and humanised way, by inter-disciplinary teams established through multi-agency collaboration across all sectors – public, private and third sector. This vision of WHO defines the challenge facing every European State. Human capacities for “institutional-evolution” and “cross-boundary cooperation” are the limiting factor, not money, not technology or know-how. Meeting the challenge requires a co-evolutionary process of transformation based on systemic collaboration across all sectors and organisational boundaries, driven by the needs and participation of empowered citizens, who having most to loose or gain are the final arbiter of successful change.

Cross-sector and inter-organisation partnership will require new tools
and approaches to facilitate accord between different perspectives and interests, and foster genuine cooperation among all stakeholders. “Systemic frameworks”3 are intellectual tools to help us deal collectively with situations of complexity and uncertainty, by clarifying our thinking, enabling us to model the whole situation, and plan and execute activities towards commonly defined objectives and outcomes. The fundamental property of systemic frameworks is “the whole enables outcomes that are beyond the capacity of its individual parts”. Systemic frameworks based on the scientific methodology of “Systems Practice”4, have a well established academic and practitioner base. Two examples of systemic frameworks used to facilitate improvement in health systems are the seminal Chronic Care Model (CCM)5 of the MacCole Institute, and an expanded version by the WHO adapted to low-income country conditions - the Innovative Care for Chronic Conditions Framework (ICCC Framework).6

Copyright © 2007 Associação Cuidados Globais Comunitarios (CGC)

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

An example of a systemic framework The Chronic Care Model – developed by the MacCole Institute, USA ® ACP-ASIM Journals and Books

An integrated approach to long-term and end-of-life care requires
interdisciplinary team practice based on a triad of co-responsibility between biomedical and psychosocial caregivers, plus the patient and their family. Care plan cycles are agreed and revised by initial and continuous co-assessment of patient and family needs, with the home and community setting being the hub of service delivery. The triangle of the Kaiser Permanente service delivery model can be used to stratify patient needs according to an ascending degree of complexity, risk and dependency, with end-of-life palliative care at the apex, and the 70-90% of patients needing prevention and self-management support at the base, so that resource mobilisation is both effective and efficient. Appropriate timely interventions at lowerneed levels of this service delivery pyramid will prevent, reduce and slow the migration of patients to higher more resource intensive levels. Research by the WHO shows that targeted modification in the life-styles of people “at risk” of entering the base of the pyramid, will significantly reduce the burden on care resources. Enhancing the role and capacity of primary biomedical practitioners is paramount to provide better prevention and patient self-management support, and - especially in rural areas - to be supported by consultants from remote specialised hospitals via telemedicine, for assistance in disease management and the control of pain and other symptoms of chronic, geriatric and end-of-life conditions.

Copyright © 2007 Associação Cuidados Globais Comunitarios (CGC)

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

Complementary to biomedical care, and supporting it, is psychosocial care - which comprises a range of interventions, including the humanisation of care by trained volunteers; social work; pastoral work; crisis response; psychotherapy; physiotherapy; well-being therapies like massage; group-activities for mutual support and creativity; as well as practical assistance such as home-adaptations, home-support services like cleaning, food delivery and its preparation. Psychosocial care is essential across the whole continuum of “total care” for chronic, geriatric and end-of-life conditions – from prevention through to diagnosis, treatment, survivorship, palliative care and bereavement, because with biomedical care, it encompasses the totality of human life, ranging across the physical-behavioural, mental, emotional, social, existential and spiritual domains

Community-based networks for the provision of total care need
to be mobilised urgently to meet the unparalleled growing demand of patients and families coping with chronic, geriatric and end-of-life conditions within the home and local community setting. A large number of stakeholders across all three sectors (public, third and private) will be implicated for enabling and supporting the formation of multi-agency collaboratives within territorial jurisdictions to deploy interdisciplinary teams of centre-based and domiciliary caregivers – including trained local volunteers who are professionally supervised. The level of inter-organisational communication, coordination and cooperation required to ensure the quality, continuity and financial sustainability of devolved service delivery is historically unprecedented.

“Value Chain Optimisation” through information technology, as
advocated in a White Paper8 authored by PricewaterCoopers and published by IBM, presents an important partial aid to the solution. Indeed, information and computing technologies (ICT)9 have great potential to enable transactional processes required by public service delivery in the 21st century - especially the new mobile Internet applications developed by wireless telecommunications, which facilitate remote patient monitoring and specialist support to primary caregivers at the point of care, within the home and community setting, irrespective of time and distance.

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

Without human willingness for “institutional-evolution” and “cross-boundary cooperation”, information technology is an expensive failure. ICT can only facilitate, not substitute, human communication, coordination and collaboration.

The Portuguese healthcare and social-protection systems

are grappling with the complexities and uncertainties of escalating 21st century challenges and opportunities, relating to the transition of their developmental focus from “cure” to “prevention and quality of life”.10,11,12,13,14,15,16 The same is true for all other countries across Europe. Systemic frameworks pioneered by the MacCole Institute in the USA and the WHO for transforming the quality and effectiveness of healthcare practice, are ground-breaking inspirational models, elaborated towards political-socio-economic conditions and opportunities which are not specifically European, and may not match with certain important aspects inherent in the Portuguese and European context.

The Modelo Cuidados Globais Comunitarios

– the community-based total care model (Modelo CGC), is a first draft for a Portuguese systemic framework to facilitate successful cross-sector and multi-agency delivery of integrated healthcare and social services, for long-term and end-of-life care within the home and local community setting. Inspired by the work of MacCole Insitute and the WHO, the Modelo CGC is a tool for proactive initiative and innovation centred in the local community, in accordance with national government standards. Computerisation of Modelo CGC as a “Graphical User Interface” (GUI) for a software application within a dedicated “Community of Practice” (CoP) Internet Portal, will dramatically enhance and extend its utility, enabling on-line collaboration for project management, elearning, and the management of change, knowledge and risk. Computerisation will enable the development of “layers” within the CGC Model, allowing users to “drill down” and access enlarged and more detailed versions of particular components and service management models within the systemic framework. A systemic framework for the Portuguese context The Modelo Cuidados Globais Comunitarios (Modelo CGC) © Associação Cuidados Globais Comunitarios 2006-2007

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

The Modelo CGC expands the systematic framework of the MacCole Institute’s Chronic Care Model (CCM), to include more elements of the community and support environment specific to Portugal and Europe. Research collaboration between a Portuguese University and the MacCole Institute is envisaged, to adapt to Portuguese conditions, the innovative evidencebased components and methodologies developed by the MacCole Institute. Clicking on the computerised graphical user interface (GUI) version of Modelo CGC, will enable users to drill down to other MacCole Institute derived components not visible on the “home layer” of Modelo CGC. The components on the top layer of the Modelo CGC are: The red triangle of the interdisciplinary “Care Team” is an organisational entity that is the central focus of Modelo CGC. It is a triad of co-responsible partners comprising biomedical and psychosocial caregivers plus the patient and family. The blue circle of “Collaborative Learning and Practice” is a domain that functionally corresponds to the MacCole Institute’s “Breakthrough Series”18. The green disc of “Care Delivery Transformation” is the domain that encompasses the Care Team and the Collaborative Learning and Practice domain. “Care delivery transformation” is the principle objective of the Modelo CGC. The brown dotted circle of “Risk Management” is a trans-domain, which means it functions as a pervasive discipline within every other domain and organisational entity of the Modelo CGC. The light-blue disc of “Community Needs and Resources” is a domain of local community. Its dark blue dashed border represents the territorial boundary of a local Portuguese administrative jurisdiction, such as a Concelho (municipality) or its subjurisdiction of a Freguesia (parish).

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

The red oval of “Community Collaborative”17 is an umbrella organisation acting within the domain of local community - representing local institutions and provider organisations from all sectors, who are directly responsible for establishing multiagency interdisciplinary care teams and mobilising local civil society and communitybased resources to enhance their functioning. The constitution and functioning of each community collaborative can be formalised through the mechanism of a “Cooperation and Framework Agreement”. The mauve disc of “Support Environment” is a domain which encompasses every jurisdiction outside of the boundary of the Portuguese Concelho (municipality) including the Distrito (a grouping of municipalities); the Regional (a grouping of districts); the Nacional (continental Portugal) and extending out to the EU and beyond. The Portuguese systems for healthcare and social protection are portrayed as traversing the local community boundary, showing that these national systems exist both partly within the local community and outside it. The red crescent of “Third Sector Consortium” is a third sector umbrella partnership association – the CGC association – to represent a national coalition of third sector stakeholders, who - in consultation with Private and Public sector partners – are committed to the development of a systematic and community-based approach to total care that is equitable and of high quality. The structure envisaged for the CGC association comprises a coordinating executive plus four autonomous working groups, as follows:

A scientific and academic consortium acting as an inter-institutional faculty for education and training plus research and development focused in three main areas: proactive and integrated healthcare; technological support (ICT); and community action and citizen empowerment. A co-funding and financial management consortium to facilitate co-funding from multiple sources (e.g. foundations) to establish a social investment fund and associated banking services for the development of third sector social enterprises, together with the transparent financial management of projects through the kind of project cycle19 methodology used by UN agencies to assure feasibility, quality of performance and accountability. A consortium for developing devolved reimbursement mechanisms which ensure subsidiary in resource allocation and accountability to citizens at the local

Copyright © 2007 Associação Cuidados Globais Comunitarios (CGC)

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

community level. Cooperation with the scientific and academic research consortium will be advantageous for developing a transactional infrastructure, based on information technology, for efficient supply-chain management. A consortium for mobilising Civil and Corporate Social Responsibility through the social and conventional media, to raise citizen awareness and activism for participatory community action; empower citizens to make informed choices about care service provision; support patients and family caregivers in prevention and selfmanagement; provide a vehicle for effective citizen advocacy; and engage with business to foster “corporate citizenship” through employee volunteering and corporate social responsibility initiatives. The CGC executive will comprise representatives from each of the four working groups, and will have a two-fold role: the systematic coordination of work across multiple strategy areas, including project management and programme development support, as well as facilitating collaboration across multiple stakeholder groups, and the creation of social enterprises that will provide appropriate goods and services, assure the economic sustainability and equitability of the CGC programme, and regenerate the social banking fund for investing in the growth of existing social enterprises and the creation of new ones as the opportunity arises.

In conclusion,

going from “cure” to “prevention and quality of life” is a huge undertaking for any national system of healthcare and social protection, and without the genuine contribution of professionalised third sector enterprise, neither quality of service, equitability nor financial sustainability can be assured. Research20 commissioned by acevo, the UK professional body for third sector leaders, shows that third sector projects and services “place the well-being of citizens at their centre, exploring innovative ways of delivering services both within and outside of pubic policy mainstream.” - and, third sector leaders believe “that the deeper well-being [and personal development] of service users, staff and volunteers is the key objective of their work” As John Ruskin, the 19th century British sociologist affirmed: “The highest reward for a man’s work is not what he gets for it, but what he becomes by it”.

Raymond Aitken, Research and Innovation, AMARA Email: raymond.aitken@amara.pt

Copyright © 2007 Associação Cuidados Globais Comunitarios (CGC)

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

This paper was prepared for “Leadership for a New Europe – The Third Sector Solution”, a workshop organised by Euclid – the European network of third sector leaders – at the Calouste Gulbenkian Foundation, Lisbon, 20-22 September 2007

AMARA was established in 2003 to help terminally ill people and their families through psychosocial accompaniment by trained volunteers. In partnership with renowned biomedical and psychosocial practitioners from Portugal, Spain and Canada, AMARA also provides specialist training at post-graduate level, for the humanisation of terminal and long-term care delivered by Portuguese healthcare professionals. Entrepreneurial earnings from training courses, book publication, events and consultancy represent the principal source of AMARA’s operating finance www.amara.pt

REFERENCES:
1. Definition of the “Third Sector”: The Third sector of a nation's economy consists of those entities which are not-for-profit and yet, at the same time, are not agencies of the state - i.e: charities, foundations, voluntary and religious organisations, mutuals and social enterprises (see reference 27). The Third Sector is equivalent to the term "civil sector", and is often used to make a clear distinction, relative to the Public and Private Sectors. In some countries, Third Sector organisations may be subject to special state regulation, if they wish to qualify for certain tax exemptions, based on the principle that they re-invest all their operating surplus (profits) in the social good. See "acevo" at: http://www.acevo.org.uk ; "Euclid" at: http://www.euclidnetwork.eu ; The UK Government “Office of the Third Sector” at: http://www.cabinetoffice.gov.uk/the_third_sector/ ; and "3rd-sector-pedia" at: www.3rdsectorpedia.net 2. “Social Enterprises” are organisations that are managed in accordance with the discipline of best business practice, but where any profits are reinvested in the improvement and extension of social services and goods. For example, the establishment of Social Enterprises in health and social care is being advocated by the UK government Department of Health as a key part of radical “patient-led” reform of the National Health Service. http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/Commissioning/SocialEnterprise/fs/en 3. Definition of “systemic framework”: A system is an integrated whole whose properties arise from the relationships between it parts (from the Greek synhistanai, meaning “to place together”. To understand things systemically literally means to put them in context, to establish the nature of their relationships. (Source: Systems Practice website – www.open2.net/systems/practice/index.html A systemic framework is a system of systems, with each component system (or a composite of several systems) being viewed within the context (environment) of a greater whole. 4. Systems Practice - managing complexity http://www.open2.net/systems/index.html 5. The Chronic Care Model - Improving Chronic Illness Care programme, MacColl Institute for Healthcare Innovation, Group Health Center for Health Studies, 1730 Minor Avenue, Suite 1290, Seattle, WA 98101-1448 www.improvingchroniccare.org

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

6. The Innovative Care for Chronic Conditions Framework, WHO 2002 www.who.int/diabetesactiononline/about/ICCC/en/index.html 7. Innovative Care for Chronic Conditions: Building Blocks for Action, WHO 2002 http://www.who.int/diabetesactiononline/about/icccreport/en/index.html 8. E (Health) Transformation: Managing Healthcare in a Networked World. A White Paper by PricewaterhouseCoopers, November 2001 http://www-935.ibm.com/services/us/gbs/bus/pdf/ibm_healthcaremanagement_ehealth_transformation.pdf 9. Definition of “ICT”: ICT stands for “Information Computing Technologies”. For the purposes of the present document, it means the fusion of computing technologies, telecommunications and the Internet, so that it becomes possible to obtain, share and manage information, whether in the form of text, audio or video, both synchronously (real time) and asynchronously (delayed time), so as to enable collaborative working across organisational boundaries, irrespective of geographical barriers, and through a wide range of devices, including 3G mobile phones, interactive digital television, PDA’s, computers and telemedicine monitoring systems. 10. Bentes M, Dias CM, Sakellarides C, Bankauskaite, V. Health care systems in transition: Portugal. Copenhagen, WHO Regional Office for Europe on behalf of the European Observatory on Health Systems and Policies, 2004. http://www.euro.who.int/document/e82937.pdf - see pages 95 and 96 for the “Five key factors impairing health care reform implementation” - the headings are: Poorly informed decisions; Normative tradition; Command-and-control administration; Lack of policy sustainability; Governance limitations and resistance to change 11. EUROFAMCARE – Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage. National Background Report for Portugal, July 2004 ISBN 3-8258-0191-5 http://www.uke.uni-hamburg.de/extern/eurofamcare/documents/nabares/nabare_portugal_rc1_a4.pdf 12. The official website of Rede Nacional para os Cuidados Continuados Integrados (RNCCI) is: http://www.rncci.min-saude.pt/RNCCI/ 13. Information about the Rede Social can be viewed (in Portuguese language only) on the website of the Portuguese Ministry of Work and Social Solidarity at: http://195.245.197.196/left.asp?03.06.10 14. A very useful review and description of the Rede Social in the English language is: Support for social and community development - Peer Review in the Field of Social Inclusion Policies: Portugal 2005 - A Paper by Jean Pierre Pellegrin (Thematic Expert) and Fernanda Rodrigues (National Expert). Published on behalf of European Commission, DG Employment, Social Affairs and Equal Opportunities. http://www.peer-review-social-inclusion.net/peer-reviews/2005/review-22/05_PT_disc_en_050905.pdf 15. The website of the Conselho Nacional para a Promoção do Voluntariado (CNPV) is: http://www.voluntariado.pt/left.asp?01.01.01 16. Organic Farming in Portugal (Country Report 2000-2006) Prof. Dr. Ana Firmino, Universidade Nova de Lisboa Editor: FiBL – A German Research Institute of Organic Agriculture with co-funding by the EU-Commission, Agriculture Directorate-General - good background information about weak capacity of collaboration in Portugal http://www.organic-europe.net/country_reports/portugal/default.asp#author 17. A “Community Collaborative” is a consortium of local community organisations, from across the public, private and third sectors, which by working together collaboratively, can provide facilities and/or services for integrated and coordinated health and social care, within the home and local community setting (both outpatient and in-patient), for patients and families coping with chronic conditions or in need of end-of-life care and support. Members of the Collaborative will communicate and cooperate with one another as part of a comprehensive value-added chain of providers and users (patients and families), including the exchange of information, as well as the execution of payment and reimbursement transactions.

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

A formal legal and transactional framework for the operation of the Community Collaborative, including the production of an annual review and improvement plan, will be developed. This virtual inter-organisation of local stakeholders will operate at the Municipal level, to ensure high quality service delivery through establishing a win-win situation for all participants. 18. The Breakthrough Series: the Institute for Healthcare Improvement’s Collaborative Model for Achieving Breakthrough Improvement. IHI Innovation Series white paper. Boston: Institute for Healthcare Improvement; 2003. http://www.ihi.org/IHI/Results/WhitePapers/TheBreakthroughSeriesIHIsCollaborativeModelforAchiev ing+BreakthroughImprovement.htm 19. The Project Cycle: below is a webpage address that gives a description of the Project Cycle, and how it is used in the context of the design and implementation of development projects funded by the World Bank: http://web.worldbank.org/WBSITE/EXTERNAL/PROJECTS/0,,contentMDK:20120731~menuPK:413 90~pagePK:41367~piPK:51533~theSitePK:40941,00.html 20. Wellbeing, happiness and third sector leadership, acevo briefing by Nick Aldridge – ISBN 1900685-41-8

OTHER BIOBLIOGRAPHY:
21. HEALTH21: an introduction to the health for all policy framework for the WHO European Region Published by the World Health Organization, 1998 http://www.eurocare.org/who/policy/health21.pdf 22. Healthy Cities and urban governance – programme of the WHO The WHO Healthy Cities programme engages local governments in health development through a process of political commitment, institutional change, capacity building, partnership-based planning and innovative projects. It promotes comprehensive and systematic policy and planning with a special emphasis on health inequalities and urban poverty, the needs of vulnerable groups, participatory governance and the social, economic and environmental determinants of health. It also strives to include health considerations in economic, regeneration and urban development efforts. http://www.euro.who.int/healthy-cities 23. Improving Care for People With Long-Term Conditions: A Review of UK and International Frameworks, produced by the UK NHS Institute for Innovation and Improvement, in association with the University of Birmingham Health Services Management Centre. http://www.improvingchroniccare.org/downloads/review_of_international_frameworks__chris_hamm. pdf 24. Community participation in local health and sustainable development – approaches and techniques, the WHO Regional Office for Europe, 2002 – page 13 http://www.euro.who.int/document/e78652.pdf 25. The Asset-Based Community Development Institute (ABCD) - Capacity-building community development based on citizen empowerment www.northwestern.edu/ipr/abcd.html 26. SOLAR - University of the West of England Frenchay Campus Bristol, BS16 1QY SOLAR is an inter-disciplinary research and development team, which specialises in new forms of action research and co-inquiry to support learning and change in complex social and organisational systems. The focus of SOLAR is on cross-boundary work across “whole systems”. http://www.uwe.ac.uk/solar 27. A new model of "Community Hospital":

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GOODWILL ACROSS BORDERS – the CGC model • from “cure” to “prevention and quality of life”

An Information Paper by Raymond Aitken, Research and Innovation, AMARA – www.amara.pt

Technological and clinical advances have created new opportunities for better quality, and more cost effective delivery of a wider range of services, closer to where people live. There is no longer any economic or clinical justification to continue to locate many such services in remote centralised tertiary hospital sites. Many European governments are now reversing decades of policy, by investing in a new generation of smaller hospitals, which are located within the community, and which are integrated with other local services and facilities. Community hospitals are proving to be an important factor in enabling a growing population of older citizens to regain and maintain their independence - in their communities and in their homes. This is why the UK Government's Department of Health is investing up to £750 million over the next five years in a new generation of "Community Hospitals" Reference: "Our health, our care, our community - investing in the future of community hospitals and services", published by the UK Department of Health, 5 July 2006: http://www.dh.gov.uk/assetRoot/04/13/69/32/04136932.pdf

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