The Together for Short Lives Transition Taskforce is calling on the Government to do more to ensure smooth and well planned care for young people who transition from children’s to adult’s palliative care services.
The call comes as Peers prepare to debate the second reading of the Care Bill in the House of Lords on Tuesday (21 May). The Bill, which will streamline the law relating to adult social care in England, will – for the first time – enable local authorities to assess the social care needs of young people under the age of 18 as they prepare to transition to adult services.
Transition needs to be planned for years in advance, yet preparation is often disjointed and poor. The reduced services and support routinely offered by adult agencies, which are often focused on older people and end of life care, comes as a distressing shock to many young people and their families. Parents have described transition as like “standing on the edge of a cliff, about to fall into a black hole”.
David Strudley, Executive Chair of the Transition Taskforce said:
“The Care Bill provides a golden opportunity to ensure that young people who need palliative care do not have to endure the uncertainty and distress too often associated with transition from children’s to adult’s services. We welcome the Government’s focus on this issue in the Bill; however, much more clarity is needed to ensure that smooth transitions become a reality for young people and their families.”
“The Government must go further by putting duties on local authorities to begin the transition planning process at the age of 14 – and ensure that five-year rolling plans are in place by the age of 16. Local authorities must also be obliged to work with other agencies – including the NHS – to ensure that planning is centred on the young person and takes into account their hopes and aspirations.
“The Transition Taskforce is calling on Peers to support us in pressing the Government on this issue in Tuesday’s important debate.”