Together for Short Lives
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Five ‘must-dos’ for the UK Government

High quality children’s palliative care is vital and can make a real difference to the lives of seriously ill children and their families. But too many children experience palliative care that is disjointed, uncoordinated and which does not meet national standards.

To address the systemic problems that are stopping children getting the care they need, we are calling on the UK Government to commit to the following action:

Actions to take now

1. Commit to ringfencing and centrally distributing the £26 million of NHS England funding for children’s hospices for 2025/26, announced by the Government on 19 December 2024, and ensure this funding is maintained and increased by at least the rate of inflation for years beyond 2025/26.

2. Hold local NHS bodies and councils to greater account for implementing the existing policy frameworks relating to children’s palliative care; this would include requiring ICBs to complete an Ambitions for Palliative and End of Life Care self-assessment and to report on progress annually.

As part of the NHS 10-year plan

3. Commit to reviewing the way in which children’s palliative care is planned and funded, including:

  • Whether children’s palliative care would be more effectively commissioned at a national or regional level to create economies of scale.
  • How the £295 million annual gap in NHS spending on children’s palliative care can be filled.
  • How NHS and voluntary sector providers in England, including children’s hospices, can be funded equitably and sustainably for the long-term.

4. Use the existing children’s palliative care workforce more effectively across the UK and ensure professionals from different roles have the skills and experience to care for children and young people with life-limiting or life-threatening conditions.

5. Close the £2.4 million annual funding gap in GRID and SPIN training for paediatric consultants and address shortfalls in education and training for other professionals, including NHS community children’s nurses.

Time is short for seriously ill children and their families. It is therefore vital that the UK Government commits to this action to ensure they can make the most of every moment that they have left together because short lives can’t wait.

Our asks align with the joint manifesto for palliative and end of life care which we have developed in partnership with Hospice UK, Marie Curie, the National Bereavement Alliance and Sue Ryder.

We also support the manifesto of the Disabled Children’s Partnership, of which we are a steering group member.

Policy and influencing