Moving from children’s services into adulthood can be a stressful time for young people with a life limiting condition.
On this page we’re sharing resources to help you support young people and their families effectively.
What is Transition?
'Transition' describes the purposeful and planned process of supporting young people to move from children's to adults' services [1]. The process should support children and young people’s medical, psychosocial, educational and vocational needs.
What is the need?
The number of children and young people with life limiting conditions is increasing, and a growing number are living into adulthood [2].
As young people mature, their needs and preferences change. This means the models of care used to support them need to be adapted. If transition is not effectively planned and managed it can result in:
- the young person disengaging with services, and their condition worsening.
- poor outcomes in the young person’s health, social participation and education.
What does ‘Transition’ mean to young people?
Hannah's experience of transition
Young people tell us that it can be challenging or impossible to find the support and services they need as they transition.
In this video, Hannah explains her unique experience of transition.
Support and resources for professionals
Every young person with a life-limiting or life-threatening condition should have access to appropriate care and support. This should reflect their individual needs and preferences.
We’ve developed some resources to help you support young people as they transition into adulthood, based on discussions with children and young people themselves, their families, and those who care for them.
Being curious and confident: evaluation report
Read the learning from the three-year Hospice UK transition programme for young people with life-limiting conditions, in this summative evaluation report: 'Being curious and confident'.
References
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National Institute for Health and Care Excellence (NICE). Transition from children’s to adults’ services for young people using health or social care services: NICE guideline [NG43]. 2026 Feb 24 [cited 2023 Mar 09].
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Fraser, L, Gibson-Smith, D, Jarvis, S, Norman, P, Parslow, R. ‘Make Every Child Count’: Estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom. Final Report. Together for Short Lives. 2020.