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Real People, Real Lives: a small scale pilot project exploring case studies of the transition experiences of young people with long term conditions and disabilities who have recently moved from children's to adult serrvices in Cheshire and Merseyside

Medforth, N and Huntingdon, E (2015) Real People, Real Lives: a small scale pilot project exploring case studies of the transition experiences of young people with long term conditions and disabilities who have recently moved from children's to adult serrvices in Cheshire and Merseyside. In: Royal College of Physicians Conference - Transition: developmentally appropriate care for young people with long term conditions, 12th October 2015, London.

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Aims The aim of this pilot project was to carry out Case Studies which will explore the different transition pathways and experiences of young people representing the following groups: • Young people who have common long – term conditions such as Diabetes and Epilepsy which are predominantly self-managed at home, with oversight from centres with specialist expertise. • Young People who have long term conditions which require intermittent or regular hospital-based intensive support such as those who are technology dependant or require frequent admissions for acute or specialist care. • Young people who have disabilities and complex needs. • Young people who are receiving support from Child and Adolescent Mental Health Services. The intended outcomes were to provide the local Strategic Clinical Network Special Interest Group with insight into how strategies to improve the experience of transition could be informed by the lived experiences of: • Young Service Users who had recently undergone transition from children’s to adult services • The viewpoints of their parents and carers • The perspectives of lead professionals involved in planning, coordinating and supporting the transition process. Methods Six Case Studies were constructed following face-to-face semi-structured interviews with young people, parents and carers representing the above groups. The young people involved had experienced the transition from children’s to adult services during the previous six months to three years. Where it was possible to identify and access a lead professional who was involved in planning and co-ordinating the transition their perspective was also sought through separate face to face and telephone interviews before inclusion within the appropriate case study. Results The Case Studies demonstrate that parents have a good understanding of what Transition means, and have endeavoured to explain this to their children. Some parents and carers were aware of policy guidance and expectations, for example the recommendation that planning should start during the early teenage years. This is not necessarily what they have experienced themselves. There were some examples of good practice and transitions support where knowledgeable and experienced practitioners were able to plan holistically to work across boundaries and overcome barriers to assure the best possible outcomes for young people. Other young people and their parents were not able to identify someone who had taken lead responsibility for co-ordinating their transition to adult services. Emerging themes included : • Variable Transition Plans and experiences • Young people still “getting lost” in transition • Variable involvement of young people and families in decision-making • The influence of different traditions, levels of practitioner confidence and models of service provision • Training needs and developing expertise and best practice in transition support • Fearful young people and “battle-weary” parents • The positive and negative impact of transition experiences • Loss of services • Key messages from families • Communication, planning and process • Improving services and support Conclusions 1. Transition services across the region include some areas of good or developing practice as well as some examples of inadequate transition planning and services to meet the needs of young people who have long term conditions, special educational needs or disabilities. 2. It is not currently possible to conclude that all transition experiences in the region universally meet sector standards and best practice guidance. 3. Families would like those in charge of commissioning services and making financial decisions to hear their stories and understand the challenges they face. 4. The Strategic Clinical Network is in a privileged position to make some transformational changes to benefit young people, parents and carers – to achieve this they may need to be courageous in re-thinking delivery models and the relationship between services designed to meet the needs of children and adults. This is likely to involve working in partnership with other Strategic Clinical Networks and Clinical Commissioning Groups. 5. There are some good examples of effective practice, but transition planning often starts late and may be vague and fragmented, have gaps or fail to adequately involve young people parents and carers in decisions. 6. Transition outcomes for young people and families can be positive, however the researchers found several examples of diminished service provision to the detriment of service users. 7. Where transition planning has worked well this has been because there has been a dedicated Key Worker, named lead professional or Transition Team who have developed expertise; are able to coordinate regular meetings and bring together multi-disciplinary/ multi-agency teams; effectively involve service providers and users and develop creative solutions to overcome barriers in order to meet the individual needs of young people and their families. 8. The planning process needs an approach which bridges divisions between children’s and adult services; health, social care and education; hospital and community settings; geographical boundaries - service provision needs to develop to match this approach. 9. Training, resources, and pathways need to be developed for both practitioners and families involved in developing and implementing Transition Plans. 10. New models of care provision and new ways of working will be essential to success; new technologies could contribute to solutions.

Item Type: Conference or Workshop Item (Paper)
Uncontrolled Keywords: Young People; Disability; Long Term Condition; Transition
Subjects: R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
R Medicine > RT Nursing
Divisions: Nursing & Allied Health
Date Deposited: 26 Oct 2015 09:54
Last Modified: 13 Apr 2022 15:14
URI: https://researchonline.ljmu.ac.uk/id/eprint/2236
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