VSS - POLICY BRIEFING. Transitions between children s and adult s health services, and the role of voluntary and community children s sector

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1 VSS - POLICY BRIEFING Transitions between children s and adult s health services, and the role of voluntary and community children s sector

2 INTRODUCTION Currently when a young person is transferred from children s services, support and care can be poorly coordinated and patchy. Multi-agency transition planning for young people is key to providing high quality transition services. 1 The Royal College of Nursing s Lost in Transition: moving young people between child and adult health services (2007) 2 defines transition in this context as the planned, purposeful movement of adolescents and young adults from child-centred to adultorientated health care systems as distinct from a single chronological event. Similarly, the Royal College of Paediatrics and Child Health, in Bridging the Gaps: health care for adolescents (2003) 3 emphasises the critical importance of careful preparation and planning and of consulting with and skilling young people up to make this important transition in their lives. However, in practice there are longstanding concerns that transitions between children s and adult s health and social care services can too often fall far short of being the on-going, needs-led guided, educational therapeutic process or the seamless ideal vision set out in policy and practice guidance. A decade ago Hurtling into a Void: transition to adulthood for young disabled people with complex health and support needs, (Morris 1999) 4 described the anxieties and uncertainties experienced by disabled children and young people at this critical time of transition and commented on the failure of agencies to work in a needs-led and coordinated way. More recently Transition: Moving on Well (Department of Health 2008) 5 acknowledged the gaps in provision and lack of coordination, observing that a poor transition out of children s services, too often characterised by a lack of continuity and follow-up, can lead 1 Department of Health (2004) Core Standards, National Service Framework for Children, Young People and Maternity Services. Department of Health 2 Royal College of Nursing s (2007) Lost in Transition: moving young people between child and adult health services. RCN 3 Royal College of Paediatrics and Child Health (2003) Bridging the Gaps: health care for adolescents. Royal College of Paediatrics and Child Health 4 Morris, J (2000) Hurtling into a Void: Transition to Adulthood for Young Disabled People with Complex Health and Support Needs. Pavilion 5 Department of Health (2008b) Transition: moving on well. Department of Health

3 not only to considerable anxiety but to disengagement from health services and self-care regimes. This can have serious consequences for both the young people themselves in terms of deteriorating health, and for services in terms of additional costs incurred later as they attempt to redress conditions grown more acute due to neglect. For some groups of children and young people, such as those with disabilities, HIV or mental health problems, looked after children and those leaving youth justice settings, there are particularly acute transition issues. These require proactive, supportive, multi-agency responses built on careful forward planning and coordination between a range of statutory and voluntary agencies. POLICY BACKGROUND The Children s Plan: Building Brighter Futures (DCSF 2007) 6 and the child health strategy emanating from it, Healthy Lives, Brighter Futures (Department of Health and DCSF 2009) 7, and the National Service Framework for Children, Young People and Maternity services (Department of Health 2004) 1 all acknowledge the importance of transition planning. This should ensure that young people are supported as they move between children s services and the adult care services, to ensure that they do not fall between the gaps in provision or become alienated by the often quite different ethos and demands facing users of adult services. Other policy documents, reviews and white papers such as Healthy Children, Safer Communities (2009 ) 8, Statutory Guidance on the Health and Well-being of Looked After Children (2009) 9, Aiming High for Disabled Children (2007) 10, and Valuing People: A new strategy for learning disability for the 21st 6 Department for Children, Schools and Families (2007) The Children s Plan: Building Brighter Futures. DCSF 7 Department of Health and Department for Children Schools and Families (2009) Healthy Lives, Brighter Futures.Department of Health and DCSF. 8 Department of Health, Department for Children, Schools and Families, Ministry of Justice and Home Office (2009) Healthy Children, Safer Communities:a strategy to promote the health and well-being of children and young people in contact with the youth justice system. Department of Health 9 Department for Children, Schools and Families (2009) Statutory guidance on promoting the health and well-being of looked after children. DCSF. 10 HM Treasury and Department for Education and Skills (2007) Aiming high for disabled children: better support for families. HM Treasury.

4 century (2001) 11, have all, to a greater or lesser extent, highlighted the particular transition needs of specific groups of young people who are judged to face extra hurdles in making a successful transition to adult life and services. The Social Care Institute for Excellence (2004) 12 research briefing on the transition of young people with physical disabilities or chronic illnesses from children s to adult services, identified common themes emerging across the literature on the subject of transitions. These common themes included apprehension amongst young people as they approach and go through transition; the changing roles of families and carers; the critical need to ascertain young people s views on effective models of care and their active participation in shaping services; and the failure of different agencies to work and plan together. As the best practice guidance contained in Transition: getting it right for young people 13 observes, the interface between children s and adult health services is becoming an increasingly important issue as more children and young people with conditions formerly often lethal in early childhood are now surviving into adulthood. There is consequently an increased need for multi-agency working, coordination and accountability across different organisations within both the public and voluntary sectors. The desirability of, and need for, involvement of voluntary sector agencies in the provision of transition support services is now widely acknowledged. It is argued that their freedom from statutory obligations allows them a greater degree of flexibility and creativity in responding to need. This is especially helpful when supporting young people s transition needs, since the health needs of young adults often have wider educational, social and financial implications which may exceed or cut across the remits of any one organisation (Department of Health, Department for Children, Schools and Families, Ministry of Justice and Home Office , Department of Health 2008 Department of Health 2006) , 11 Department of Health (2001) Valuing people: a new strategy for learning disability for the 21st century: a white paper. Department of Health 12 Social Care Institute for Excellence (2004) Transition of Young People with Physical Disabilities or Chronic Illnesses from Children s to Adult s Services. (SCIE Research Briefing). SCIE 13 Department of Health (2006) Transition: getting it right for young people. Department of Health 14 Department of Health (2008) Better Care: Better Lives. Department of Health

5 CHILDREN AND YOUNG PEOPLE WITH PARTICULAR TRANSITION NEEDS 1. Children and young people with mental health problems Whilst noting that children and young people experience and cope with several stressful and confusing transitions during their development, the recent national review of Child and Adolescent Mental Health Services (CAMHS), Children and Young People in Mind (2008) 15 found that it was the transition from CAMHS to adult mental health services that caused children, young people, their families and service providers most concern. Many young people experience mental health problems in adolescence sometimes just at the point where age-eligibility for CAMHS ceases at 18. The culture shock which some young people experience as they move between children s and adult s services can be particularly acute for those with mental health problems. The focus, ethos and requirements of adult services can differ very significantly from that of the more childcentred services they have hitherto encountered. Furthermore, entitlements and eligibility thresholds may vary confusingly between services and agencies. Information sharing between children s and adult services can be very problematic and the information provided to the young people themselves can be age-inappropriate and therefore inaccessible. The Review commended services which had cooperated to facilitate smoother transitions by, for example, producing jointly agreed transition protocols or appointing lead practitioners or transition workers. It recommended that the Department of Health undertake a piece of joint work between the policy teams responsible for CAMHS and adult mental health services to determine what action is needed to address current problems in ensuring a seamless transition between children s and adult services. It also recommended that the Department of Health and DCSF should undertake joint work involving policy teams from children s social care and adult social care to determine the action necessary to ease transition and improve the experience of young people progressing from CAMHS to adult care services. Implications for the Third Sector The Review notes that the voluntary sector already has very strong involvement in the provision of services to support children s mental health and psychological well-being and in many areas is a core part of the provision available. It calls for a more consistent 15 National CAMHS Review (2008) Children and Young People in Mind. Department of Health

6 approach to the commissioning of services to provide a firmer and more sustainable base for the funding of voluntary sector services to increase the time they have available for service development and provision, and to reduce overlaps, gaps and confusion between the wide range of agencies involved. New Horizons: a shared vision for mental health (2009) 16 takes up the theme of the voluntary sector s important role in providing effective, personalised care services and the need for collaborative approaches between statutory and third sector agencies. It points out that even third sector organisations which do not have an explicit mental health remit can produce wider benefits for mental health by their activities and services. For example social and community organisations can provide work experience opportunities for people with mental health difficulties, thereby reducing their social isolation and promoting inclusion, a major factor in promoting mental health. Writing in Lost in transition in YoungMinds magazine (May/June 2007) 17 the authors comment that transition between children s and adult mental health services remains one of the most persistent fractures in service provision. Statutory services which are often operating under immense pressures can be reluctant to accept responsibility for new referrals. However voluntary agencies, free of statutory obligations and more rigid boundaries and remits, can sometimes provide more holistic services offering, for example, packages of support including mentoring, advocacy, individual and group support and befriending services which are flexibly tailored to meet individual needs and priorities. 2. Children and Young People with Disabilities (including HIV) Disabled young people may face more challenges than their non-disabled peers during transition from children s to adult s services. Hurtling into a Void, referred to above, is only one of a number of publications pointing to the severe challenges facing young people with disabilities as they transfer from children s to adult s health services. The Aiming High for Disabled Children review and Better Care: Better Lives best practice guidance both confirmed that more needed to be done to co-ordinate services for disabled young people during transition to adult life. They indicated the government s determination to improve transition support and palliative care services for children and young people with life-limiting and threatening conditions and those with disabilities. 16 Department of Health (2010) New Horizons: a shared vision for mental health. Department of Health 17 Williams, J and Hewson, L (2009/10) Improving the transition from CAMHS to adult services, YoungMinds Magazine, 103 (Dec/Jan), p.13

7 Outlining the government s plans to achieve improved transitions, the government affirmed that transition should not be a single (often unplanned) event but a carefully considered on-going and regularly reviewed process, involving the young person themselves in planning and shaping personalised support services. Successful transition should include education, social services and voluntary agencies as active partners. 14 In 2008 the Aiming High for disabled Children programme announced funding of 19 million over the period to develop a Transition Support Programme (TSP) which, working with the Council for Disabled Children and other voluntary sector partners, seeks to raise the standards of transition support and provision in every area of the country and increase opportunities for education, employment and independent living. Implications for the Third Sector Better Care: Better Lives stated that children and families need more and better services provided on a multidisciplinary and multi-agency basis. It affirmed the need to grow existing services and increase capacity to ensure that services and personalised care options are actually available to be delivered to children and their families across a range of settings. It states that such increased capacity will ideally include provision of 24 hour access to advice and support, effective use of the specialist multi-agency professionals and services, and be delivered fully capitalising on the expertise and insight of voluntary sector partners. Referring to the voluntary sector as an under-used resource it states that there is a particular need to develop a more sophisticated and partnership-based relationship with the voluntary sector both as a key service delivery partner and to augment local statutory provision. The recent guide for funders and charities, Rights of Passage: supporting disabled young people through the transition to adulthood (McGrath and Yeowart 2009) 18 states that charities play a vital role in helping disabled young people make the leap from teenager to adult. They can be effective in easing the disorientating move to adult services through both their work in collaboration with statutory services and in their campaigning and awareness raising activities championing the needs of specific groups and challenging stigma. Young people living with HIV are particularly likely to encounter stigma and to have need of an accessible support system, so they know where to get 18 McGrath, A., and Yeowart, C. (2009) Rights of passage: supporting disabled young people through the transition to adulthood. New Philanthropy Capital.

8 help and advice when they need it. The role of the voluntary agencies is increasingly central to the provision of a range of support services, from improved information provision, youth activities, self-help groups and leisure services, through day-to-day care support for independent living, to providing employment and training opportunities: To achieve this vision we need a fully integrated approach among key delivery partners from the statutory and voluntary sectors. Only in this way can we ensure that a choice/range of services is available when needed to enable the child or young person to live as full a life as possible. 14

9 LOOKED AFTER CHILDREN AND YOUNG PEOPLE AND THOSE IN SECURE SETTINGS The health of looked after children and the provision of services to support their wellbeing on leaving care are matters of longstanding concern, with abundant evidence and indicators of poor outcomes in terms of physical and mental health and social exclusion. Again, as with children and young people with disabilities, the transition from children to adult services can result in a break in the continuity of care attended by a break in support and services. The Children (Leaving Care) Act 2000, and associated guidance and regulations, were an attempt to address some of these problems. The Act, regulations and guidance made provision for increased personal support and a Pathway planning process which includes planning and provision for how health needs will be met on leaving care. The plan should be based on a holistic assessment of health needs including the promotion of a healthy lifestyle with attention paid to leisure, social and cultural needs, as well as access to mainstream health services. The lack of help and support to address unresolved mental health problems has been identified as an acute need for this group for whom the transition time can be especially challenging. Recent research for the Local Government Association found that many leaving care teams lacked mental health experience, knowledge of existing provision and that which can be provided by the voluntary sector 19. Implications for the Third Sector The recent Statutory Guidance on Promoting the Health and Well-being of Looked after Children found that: Looked after young people aged 12 to 19 found that they particularly welcomed the more informal approach of mental health services provided by the voluntary sector. 9 The guidance states that the Pathway Plan for care leavers with complex needs, including those with disabilities, must ensure a seamless and supported transition to adult services but for those whose needs do not meet the criteria for support by adult services: 19 Higgs, L (2009) Care leavers with mental health problems lack specialist support, Community Care, 26 November-2 nd December, p.4

10 their Personal Adviser should ensure that all possible forms of support, including that offered by the voluntary sector, should be identified and facilitated as appropriate. 9 Research and surveys have consistently shown that care leavers take a broad and holistic view of health when asked what they think helps them to be, and remain, healthy. Saunders and Broad s study found that feelings about life, housing, close personal relationships, the care experience, and depression were the five most important factors cited by them. Clearly these are areas where some voluntary sector agencies may be well-placed to offer support where statutory services are limited in what they can offer or where statutory provision is simply not available. For example mentoring, counselling and mental health organisations may be able to help young people cope with their relationship problems, socialise and build confidence and thereby promote resilience and well-being at the stressful time of transition. Similarly Healthy Children, Safer Communities: a strategy to promote the health and well-being of children and young people in contact with the youth justice system mentions the role of third sector organisations (including counselling, advice and support services for families, children and young people) in promoting the health and well-being of young people in the youth justice system and providing continuity of care on transition back to the community. 20 Saunders, L., and Broad, B. (1997) The health needs of young people leaving care. De Montfort University/Centre for Social Action.

11 CONCLUSION The components of good practice which are necessary for effecting the best possible transition of young people from children s to adult s health services recur throughout guidance and literature on the subject. Careful preparation, the full and active participation of young people and their parents or carers, coordinated and accountable multi-agency planning and support; these are the foundations of successful transitions. The voluntary sector has a major role to play in this process, in raising awareness of its users needs and wishes and of course in delivering the support and services necessary for young people, and especially vulnerable children and young people, during transition. Transition: Getting it Right for Young People: Improving the Transition of Young with Long Term Conditions from Children s to Adult Health Services (2006) recommended that voluntary organisations encourage parents and young people to raise their expectations regarding the process and management of transition: They should gather examples of good and unsatisfactory practice and disseminate these and, where possible, take on the role of educators of the professions as expert patients. 13

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