Together for Short Lives
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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. Medical advances mean there are now 55,000 young adults aged between 18 and 40 with life-limiting conditions and this figure continues to grow. However, 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 UK’s governments to help stimulate new voluntary sector palliative care services for young people.

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.

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 want the UK’s governments to invest in seed-funding for voluntary sector organisations to set up age-appropriate services for young people transitioning from children’s to adult services.

In the meantime Together for Short Lives is offering 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.

Policy and influencing