Bridging the cliff edge in care between children's and adult services

Becoming a young adult should be an exciting time, full of new experiences and a time to look forward to a new adventure. But 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 more young people with life-limiting conditions are living into adulthood. There are 55,000 young adults aged between 18 and 40 with life-limiting conditions and this figure continues to grow.3

This is cause to celebrate. 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. 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.

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.

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.

We continue to lead our young people’s Transition Taskforce to encourage cross-sector collaboration, so young people can have a smooth transition.

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 – an area where there is currently a gap described as ‘a cliff edge’ for young people.