One of these events which took place in the House of Lords in London, was organised by Marie Curie Cancer Care and Together for Short Lives, Help the Hospices, and the National Council for Palliative Care and called on Government in England to do more to ensure young people with life-threatening conditions get access to the right care and support.
The event launched a new policy report Don’t Let Me Down: Ensuring a good transition for young people with palliative care needs. The report makes 15 key recommendations for change at local and national level.The event also marked the launch of a new Transition Taskforce, a UK-wide initiative led by Together for Short Lives, working with colleagues and partners across the UK including Help the Hospices, National Council for Palliative Care, Marie Curie, and the Council for Disabled Children.
The Transition Taskforce believes that all young people entering adulthood with life-limiting or life-threatening conditions should be able make the transition to adult services and live their lives as independently as possible.
It will seek to overcome the barriers to good transition by building bridges between adults and children’s services and leading the development and implementation of an integrated strategy to improve the care and support of young people with life-limiting or life-threatening conditions as they prepare for and make the transition from children’s to adult services.
It plans to:
- Build a UK-wide forum to drive the development and implementation of a strategy to improve transition for young people with life-limiting or life-threatening conditions.
- Raise awareness and influence the policy and commissioning agenda in relation to transition and develop a strong and united lobbying voice on transition for young people with life-limiting conditions.
- Stimulate new service development and partnerships between adult and children’s service providers at national, regional and local levels as appropriate.
- Develop an online hub of information, training, research and good practice in relation to transition.
The Taskforce will build on the evidence, and strengthen the excellent partnerships, that have been developed over recent years and will use this approach to inform all of its activities. It will be inclusive, working with everyone who has an interest in resolving the question of transition for young adults with life-limiting or life-threatening conditions, in particular those from adult services so that the “push” from children’s services is matched by the “pull” from adult services.
The taskforce will proactively foster engagement with young people themselves and their parents as well as a variety of different professionals.
Work will begin with a brief mapping review of current service provision and facilities to gather evidence for future work and for subsequent evaluation of the project. This review will bring together the research and knowledge that already exists as well as commission new research. It will also identify examples of good practice to inform the Taskforce Strategy and enable the development of an evidence-based business case for sustainable funding of services to support young people.
The Taskforce is being led by David Strudley, Chief Executive of Acorns Children’s Hospices in the West Midlands and Lizzie Chambers, Development Director at Together for Short Lives. The Taskforce is now looking to recruit young people, parents, carers and expert individuals from a range of professional backgrounds and sectors from across the UK to support its work programme. We would also welcome input from across the globe.
If you are interested in becoming a member of the Taskforce, please contact the Together for Short Lives office or email transition@togetherforshortlives.org.uk
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