Transition from children's to adult hospice care

Find out about our four-year programme to improve the support for young people who are transitioning from children's services into adult care.

Moving from children’s to adult hospice services can be a challenging time for young people with a life limiting condition, and their families.

With support from The National Lottery Community Fund, we've embarked on a four-year programme to improve support for young people who are transitioning from children's to adult hospice care.

What's on this page

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. 

Why is transition important for hospice services in the UK?

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. The models of care that are used to support them need to be adapted accordingly. If transition from children's to adult hospice care is not effectively planned and managed, the young person might not be able to get the professional care they need. As a result, their physical and mental health could suffer.

Hospice staff need training and support to be able to care appropriately for young adults with life-limiting conditions as they move from children's to adult services.

About the programme

Our Transitions programme is running from 2025 - 2029, and is funded by The National Lottery Community Fund.

Over four years, the programme aims to improve transition from children's to adult hospice services. We will:

  • develop a framework of training and resources for healthcare professionals
  • grow our national community of practice
  • gather and share best practice from hospices that are recognised as centres of learning
  • collate and share data about the need for services across the UK.

A young persons forum will be central to the development of this programme. This will help ensure all the programme's activities are designed with input from people with lived experience of transition.

Centres of learning

We have identified four regional centres of learning, where hospice services are working well with local commissioners and other care providers to ensure a smooth transition for young people moving into adult services.

These centres of learning are:

We will be working with the centres of learning throughout the programme to identify and share best practice. They will help us gain insights that can be implemented more broadly across the country.

The National Transition Community of Practice is a learning community for professionals who support young people with complex, life-limiting conditions as they transfer from children’s to adult services.

Testing ways to improve transition

Find out about our grants helping adult hospices test ways to improve care for young people transitioning from children's services.

Find out more

Support and resources for professionals

We’ve developed some resources to help hospice professionals support young people as they transition into adult services. These are all based on discussions with children and young people, their families, and those who care for them.  

Transition: young person-centred care

Transition: young person-centred care

Resources to help you understand and support the needs and preferences of each young person you work with as they transition to adult services.
Find out more
On this page we’re sharing young people’s thoughts about the support they need as they transition to adult services

Support, activities and respite

Find out what young people think about the support they need as they transition to adult services.
Find out more
Living with a life-limiting illness as a teenager or young adult

Living with a life-limiting illness as a teenager or young adult

The resource on this page provides information and advice from people with lived experience about living with a life-limiting illness as a teenager or young adult.
Find out more
The National Transition Community of Practice is a learning community for professionals who support young people with complex, life-limiting conditions as they transfer from children’s to adult services.

National Transition Community of Practice

Our Transition Community of Practice is a supportive learning community for professionals who support young people with complex, life-limiting conditions as they move to adult serv...

Find out more

References

  1. 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]. 2016 Feb 24 [cited 2025 Apr 10].

  2. Fraser LK, Gibson-Smith D, Jarvis S, Norman P, Parslow RC. Estimating the current and future prevalence of life-limiting conditions in children in England. Palliat Med. 2021;35(9):1641-1651.

    [Public Health Scotland]. Children in Scotland requiring palliative care (ChiSP) 3. Edinburgh: Children’s Hospices Across Scotland; 2020.

    Fraser L, Bedendo A, Jarvis S. Children with a life-limiting or life-threatening condition in Wales: trends in prevalence and complexity: final report: May 2023. [s.l.]: [n.p.]; 2023
     

Acknowledgements

We are grateful to The National Lottery Community Fund for supporting this programme.