Five ‘must-dos’ for the new UK Government

Now the general election is done, we call upon the new UK Government to commit to policies aimed at making sure children and young people with life-limiting and life-threatening conditions can make the most of every moment that they have left together.

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:

1. Review the way in which children’s palliative care is funded and fill the £295 million annual gap in NHS spending on children’s palliative care in 2024/25.
2. Fill the £2.4 million annual funding gap in GRID and special interest (SPIN) training in palliative care for paediatric consultants – in addition to other funding gaps in educating and training other professionals, including community children’s nurses.
3. Commit to action across the UK to use the existing children’s palliative care workforce more effectively – and to increase the number of professionals who have the skills and experience to provide palliative care to children with life-limiting conditions across a range of different roles.
4. Fund lifeline voluntary sector providers in England – including children’s hospices – equitably and sustainably for the long-term as their costs increase. In England, this should include a commitment to maintaining ringfenced, centrally distributed NHSE funding for children’s hospices beyond 2024/25 which increases by at least the rate of inflation.
5. Hold local NHS bodies and councils to greater account for implementing the existing policy frameworks relating to children’s palliative care.

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.