Preventing the transition cliff-edge and securing the right care for young people

For young people with life-limiting conditions, making the transition from children’s to adult services is like falling off a cliff edge. The transition these young people have to undergo from the comprehensive care offered by children’s palliative care to unfamiliar adults’ services can be daunting and is often not joined up. There are also too few palliative care services which meet the needs and wishes of young people in ways which are appropriate to their age and developmental stage. We call on the NHS

Young people with life-limiting conditions have specific needs which differ from both younger children and older adults. However, there is a lack of age and developmentally-appropriate palliative care services which can meet this growing demand. Young people with life-limiting conditions must forge relationships with new agencies and professionals, and for many young people, this transition coincides with a rapid decline of their condition.

It’s also hard for these young people to get the support they need beyond their health needs, to do all the other things that all teenagers want to do: going out, living independently, exploring their sexuality, having relationships or entering the world of work and further education. Young people face too many barriers and obstacles, making it impossible for them to get on with enjoying adulthood. They need help now; they don’t have the luxury of time on their hands.

The Making Every Young Adult Count: Estimating Current and Future Prevalence of Young People with Life-limiting and Life-threatening conditions in England study, conducted by the University of York and University of Leeds, reveals that the total number of young adults (aged 14-25 years) with life-limiting conditions in England has increased from 27,316 in 2009/10 to 38,261 in 2017/18 – an increase of 40%. This figure includes those diagnosed in both childhood and young adulthood.

Looking just at the number of young people with a life-limiting condition who were diagnosed in childhood, the increase is higher, rising from 16,107 in 2009/10 to 24,773 in 2017/18, an increase of 53%.

Paragraph 3.47 of the NHS Long Term Plan states that, by 2028, the NHS in England will aim to move towards service models for young people that offer person-centred and age appropriate care for mental and physical health needs, rather than an arbitrary transition to adult services based on age not need.

What would Together for Short Lives like to happen?

The transition of life-limited children to adult services is currently a gap described as ‘a cliff edge’ for young people. We would like:

1. NHS organisations and local authorities across the UK to plan and fund health and social care services which make sure that young people experience smooth transitions between children’s and adult palliative care services and receive care which is appropriate for their age and developmental status. The NHS and local authorities should particularly take into account the fact that life-limiting and life-threatening conditions are more prevalent in young people from minority ethnic backgrounds (in particular from Pakistani backgrounds) and those living in more deprived areas. We recommend that our ‘Stepping Up’ Transition Pathway is used as a framework to support this process.
2. NHS England and NHS Improvement (NHSE/I) all-age palliative and end of life care programme to make sure that data about the population of young people who need to transition from children’s to adult palliative care services are made available to networks, commissioners and provider.

Together for Short Lives offered financial support to some voluntary sector organisations through our Improving Transitions for Young People Fund, and our Transition Taskforce worked for three years to encourage cross-sector collaboration, so young people can have a smooth transition. Our Transition Hub features a range of resources and best practice that we developed through this work.