Young people with terminal illnesses deprived of support, report warns

The report, by Marie Curie Cancer Care and Together for Short Lives, argues that 16-and 17-year-olds currently face a “cliff edge” when they cease to be the responsibility of children’s services and move over to adult care.

This is because planning for young people’s transition between services often takes place too late, and some services are restricted to either under-16s or over-18s, the report says.

“On leaving the comprehensive care offered by children’s services, they will often have to deal with and establish important relationships with a range of agencies and professionals,” the report states.

“The result can be gaps in services or fewer or less appropriate services. All this happens at a time when young people’s needs may be greatest, as many chronic progressive conditions now reach a crisis during late adolescence and young adulthood.

“The costs of bad transition for young people can include greater illness, adverse social and educational outcomes, and even earlier death.”

The charities are now calling on central and local government to do more to support young people with terminal illnesses.

They want the government to accept the Law Commission’s recommendation that adult social care departments should have the power to assess and provide services to 16- and 17-year-olds.

They also want children's and adult services 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 for Marie Curie Cancer care, said: “Many more young people with terminal conditions who in the past would have died young are living into their adult years. That’s wonderful news, but there is a gap in services that they and their families need.

“They are in the difficult position. Their needs become more complex as they grow older, but they actually receive less support. For these young people, time is of the utmost importance. Delays in decision-making can have a serious impact on their quality of life.”

Barbara Gelb, chief executive of Together for Short Lives, added: “Age appropriate health and social care services are few and far between. Too often families tell us that they find this time in their lives incredibly stressful, as they leave children's services and struggle to find the right support.

“Working together with governments, commissioners and providers, we must take urgent action to address this growing issue.”