Leaving school, finding employment and preparing to live independently are important milestones for every young person. But for teenagers with a terminal illness, the transition to adulthood is a more significant event.
There are around 40,000 children and young people in England with a long-term health condition that is likely to cut their lives short. This figure has shot up 30 per cent over the past 10 years.
Many progressive conditions now reach a crisis point during late adolescence and young adulthood. For young people with Duchenne muscular dystrophy, for example, the likelihood of living to the age of 25 has risen from 12 per cent in the 1980s to more than 50 per cent now.
But a report by Together for Short Lives and Marie Curie Cancer Care at the end of June warned that young people are missing out on support just at the point when they need it most, leading to “greater illness, adverse social and educational outcomes and even earlier death”.
Transition ‘black hole’
Barbara Gelb, chief executive of Together for Short Lives, says young people describe the transition to adult services as “going into a black hole”.
“Relatively speaking, young people get really good support until the age of 19, across health, education and social care services,” she explains. “But adult services are much more focused on the other end of the age-spectrum. So even though young people are surviving, their quality of life can be quite poor, because their health problems are severe, they don’t have support to get into employment or higher education, and they don’t have the same level of social care or health support they would have had before.”
The government is expected to accept the Law Commission recommendation that adult services departments should have the power to assess and provide services to 16- and 17-year-olds, when it publishes its forthcoming care white paper.
But Gelb also wants children’s and adult services to be required to agree joint five-year rolling plans of support for young people with palliative care needs, from the age of 14.
Imelda Redmond, director of policy and public affairs at Marie Curie, agrees that such plans are essential if transitions are to be transformed.
“These young people are coming through in larger numbers than ever before, which is fabulous,” she says. “But the strain on the system is so big that often the planning required doesn’t happen because adult services are firefighting.”
She argues that joint planning and “tapering services” for young people can save money down the line. “At transition, young people come to the end of education and play, leisure and youth provision,” she says. “The real desire for families is a gradual change rather than a guillotine. That can save money because councils can avoid ending up in a judicial review over provision or having to fund expensive out-of-borough respite, for example.”
Bridging the gap
Richard House children’s hospice and St Joseph’s adult hospice in north-east London have been working together to improve transitions, as part of a Marie Curie pilot, which ran between February and June this year.
Peter Ellis, chief executive of Richard House, says the initiative enabled young people to get first-hand experience of what adult care entails.
As part of the scheme, Richard House’s young adult group carried out some of its regular sessions at St Joseph’s.
“After their first session at St Joseph’s, they all came back saying that it was great and that they would want to go back,” he says. “We had 19 young people in the pilot and three of them died during that period. They were supported enormously well and had the advantage of having both hospices involved.”
Heather Richardson, clinical director at St Joseph’s Hospice, says the pilot helped bridge the gap between the differing cultures in children’s and adult hospices.
“We have a huge amount to learn from each other,” she says. “We had a young man who died in our care recently. The young adult group wanted him to join their martini and karaoke party.
“In our world, we wouldn’t normally see that as appropriate. He was in our view unconscious and dying, but he did go and join the party and had a terrific time. It was very important for the other young people.”
Transitions in Solihull
By Pat Turner, transition manager, Acorns children’s hospice
“In Solihull, we were one of six Marie Curie Cancer Care and Department of Health pilots to help young people and their families going through transitions.
"We worked with the local adult hospice, special schools and colleges, as well as voluntary organisations and adult care providers, among others. The idea was that we would develop some-thing practical to ease transitions that could be replicated in other areas.
"We had a young person from our Acorns Ambassadors group involved, and we also got some parents of non-verbal young people to give their input. We came up with the concept of a snakes and ladders game as a way of introducing transitions to young people. Using the game has certainly helped start conversations about their options.
"So many different things are happening to young people at the age of transitions – they are leaving school and leaving doctors that they have known all of their life. That tends to bring up negative emotions, because they are losing friends and having to get used to new wards. We wanted to be able to give them an insight into what would be happening to them down the line, so that it would be less intimidating.
"Working with the adult hospice has been beneficial for both of us. One of the nurses now comes to the paediatric palliative care network meetings for the West Midlands. A lot of the diseases that children’s hospices deal with are childhood diseases, which were never expected to go into adulthood. That’s quite daunting for the adult hospice, so we’re sharing our experience and learning from each other.”
