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We are calling for the Bill to be amended so that Healthwatch England and Local Healthwatch effectively involve children in their work. Amendments 227 Clause 180, page 177, line 10, leave out “people” and insert “adults and children” Purpose To make explicit that Healthwatch England‟s functions to provide advice (to the Secretary of State, the NHS Commissioning Board, Monitor and English local authorities) on the views of patients and members of the public, refer to the views of children. Amendment 233 Clause 182, page 180, line 14, at end insert— “(1A) In subsection (2)(a), (b) and (c) omit “people” and insert “adults and children”” Purpose To make explicit that Local Healthwatch organisations‟ functions in: promoting and supporting patient and public involvement in the commissioning, provision and scrutiny of local care services; and obtaining patient and public views about people‟s needs needs for, and their experiences of, local care services, includes carrying out these functions with children. The amendment also ensures that Healthwatch England will provide support and assistance to Local Healthwatch organisations in relation to this.
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Briefing Healthwatch England is being established to represent the views of the public, service users in health and social care, and Local Healthwatch organisations. Local Healthwatch will take forward the work done by local involvement networks (LINks) in seeking the views of local service users in health and social care and involving them in the development of services. We urge Parliamentarians to amend the Bill to make clear that Healthwatch England and Local Healthwatch should effectively involve children in their work. We are also calling on Government to: Develop and disseminate guidance for Local Healthwatch organisations on effective engagement with children, drawing on pathfinders’ experiences. Conduct a review into how Healthwatch England and Local Healthwatch have involved children in their work, two years after commencement. Appoint a champion for children within Healthwatch England to oversee this work and to drive forward standards on children’s engagement in decision-making. The exclusion of children's voices in the NHS Evidence shows that children's views are often not sought or are overlooked within the NHS. Research commissioned by the National Children’s Bureau1 found that not all LINks understood that engaging with children was part of their official remit. Even those LINks that engaged with children often set different age parameters for their involvement, many of which excluded younger children, and children‟s involvement in setting the LINks‟ agenda was limited. Participation Works’ recent review of law, policy and practice in relation to children‟s participation in the NHS and other public services and settings found that in their efforts to support user involvement, health authorities and NHS Trusts had not specifically identified children as service users. The review also found that although 41% of GP practices reported to have a Patient Participation Group, there was no evidence of children's active engagement in these forums.2 The Council for Disabled Children’s Managing My Way research with disabled children and healthcare professionals found that the majority of professionals felt they did not receive enough training to develop their skills in communicating with young people, especially those who use different communication methods. The result is that professionals do not feel confident communicating with young people who in turn feel excluded from decisions about their own health care.3 Research by the UCL Institute of Child Health has found that the views of under-16s were only sought in 1 of 38 national surveys of patient experience in the NHS between 2001 and 2011. This comprised <0.6% of respondents, despite the fact that children represent a substantial service user group. Where the views of 16-24 year-olds had been sought, they consistently reported poorer experience of care than older patients.4 The Royal College of Paediatrics and Child Health and the NHS Confederation recently published a guide to Involving children and young people in health services which underlined the key role that they can plan in both planning and service delivery. Without that involvement, the report says that “there is little incentive for organisations to systematically ensure a good and consistent standard of service for children and young people through their whole health journey”.5 Concerns around children's involvement in patient and public voice mechanisms in the NHS were also reflected in the report of the NHS Future Forum.6
NCB (2011) LINks involvement of children and young people Burke, T. (2010). Anyone listening? Evidence of children and young people's participation in England. Participation Works. Pages 39-46. 3 Council for Disabled Children (2011), Managing My way 4 Dougal S Hargreaves & Russell M Viner (2011) Children and young people‟s experience of the National Health Service in England: a review of national surveys 2001-2011 5 RCPCH, NHS Confederation and OPM (2011) Involving children and young people in health services page 5 6 NHS Future Forum (2011) Summary report on proposed changes to the NHS, page 26 2 of 4
The establishment of Healthwatch offers an opportunity to make sure the voices of children, young people and their parents and carers are better heard. There is a real risk that this will not be realised however. A recent survey of health scrutiny chairs by YoungMinds found that 80% had not had outlined to them how children and young people could get involved in shaping local services through local Healthwatch or Health and Wellbeing Boards.7 It is essential that Local Healthwatch and Healthwatch England work for all ages, including children. The Government must ensure that these organisations have a clear mandate, and the capacity and skills, to engage with children from a variety of ages and backgrounds, including the most vulnerable. Responding to the Kennedy Review This Bill is the first legislative opportunity Parliamentarians have had to respond to the findings of the Kennedy Review, „Getting it right for children and young people: Overcoming cultural barriers in the NHS‟, published in September 2010. The Government‟s response to the review accepted Sir Ian Kennedy‟s powerful arguments about the need to engage children in the NHS: In the past, the NHS was not always set up to put the needs of patients and the public first. Too often patients were expected to fit around services rather than services around patients. Nowhere was this more the case than for children, young people and their families … If we are to meet the needs of children, young people, families and carers, it is vital that we listen to them in designing services, gather information on their experiences and priorities, provide them with the accessible information that they need to make choices about their care, and involve them in decision making [our emphasis].8 Convention on the Rights of the Child In a welcome move, the coalition Government promised in December 2010 that it would give due consideration to the Convention on the Rights of the Child (CRC) when making new law and policy. As a signatory to the CRC, the UK must take all possible steps to fully realise the rights and freedoms in the Convention, including Article 12 which states that children should have a say in all decisions affecting them and that their views should be given due weight according to their age and maturity.9 The international monitoring body for the CRC, the UN Committee on the Rights of the Child, has been clear that Article 12 applies to collective decision-making processes, as well as matters affecting the individual child. In its General Comment on Article 12, the Committee notes: … wide interpretation of matters affecting the child and children helps to include children in the social processes of their community and society. Thus, States parties should carefully listen to children’s views wherever their perspective can enhance the quality of solutions.10 In October 2008, the UN Committee issued its recommendations to the UK and, in relation to Article 12, urged the Government to widely ‘promote, facilitate and implement, in legislation as well as in practice, … the principle of respect for the views of the child [and] support forums for children’s participation [our emphasis]’.11 The above amendments would give effect to this recommendation in relation to children‟s healthcare.
Between December 2011 and January 2012 151 English local government Chairs of Health Scrutiny Committees were sent a survey by the children and young people‟s mental health charity YoungMinds. Over a quarter of all Health Scrutiny Chairs replied. See http://www.youngminds.org.uk/news/news/528_changes_to_nhs_landscape_devalue_young_people_s_participation 8 Department of Health (September 2010). Achieving equity and excellence for children. How liberating the NHS will help us meet the needs of children and young people. Pages 4 and 6. 9 United Nations Convention on the Rights of the Child http://www2.ohchr.org/english/law/crc.htm 10 United Nations Committee on the Rights of the Child (2009). General comment no. 12. The right of the child to be heard. Page 8. 11 United Nations Committee on the Rights of the Child (October 2008) Concluding observations on the UK. Page 8. 3 of 4
Government response in Committee Stage Children‟s involvement in Healthwatch was debated during Committee stage on 15 December. The Government acknowledged that “local healthwatch needs to represent the views of all people within the local population, including children and young people”. However, they rejected amendments which cited children as a specific group to be reached by Healthwatch: ... whatever the age of the patient or their family, and however marginal they may seem, we want to be inclusive and not exclusive, and if you list one group you are in danger, therefore, of excluding others. Taking into account the Government‟s concerns we are supporting a new set of amendments at Report Stage (shown above), which have been drafted to make explicit that the remit of Healthwatch includes children without inadvertently suggesting that they should take preference over adults or any other group. In Committee, Government offered the assurance that: ...as these organisations and the pathfinder local healthwatch organisations come into play, we will ensure that what noble Lords have said is flagged up to them.12 We are concerned that „flagging up‟ the issue to emerging Local Healthwatch organisations will not be sufficient and are seeking further assurances that this issue will be addressed. There must be a clearer steer from a national level to make sure the voices of children and young people are heard in the health system. In particular, we are calling on Government to: Develop and disseminate guidance for Local Healthwatch organisations on effective engagement with children, drawing on pathfinders’ experiences. Conduct a review into how Healthwatch England and Local Healthwatch have involved children in their work, two years after commencement. Appoint a champion for children within Healthwatch England to oversee this work and to drive forward standards on children’s engagement in decision-making. We hope that you will speak in the debate regarding the effective involvement of children in Healthwatch England and Local Healthwatch. This Briefing is supported by: Barnardo‟s, British Association for Community Child Health, The Children‟s Society, Council for Disabled Children, CLIC Sargent, Early Childhood Forum, Every Disabled Child Matters, Mencap, National Children‟s Bureau, NHS Confederation, Participation Works Partnership, Royal College of Paediatrics and Child Health, Wellchild, The Who Cares Trust and YoungMinds Contact: Catherine Hodder, Parliamentary Adviser, Children‟s Rights Alliance for England, firstname.lastname@example.org 0207 278 8222 ext. 27 Keith Clements, Policy Officer, National Children‟s Bureau, email@example.com 020 7843 6332
HL Deb, 15 December 2011, c1499, http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/111215-0003.htm#11121598000527 4 of 4
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