An overview of children’s palliative care in the UK in 2024

Our new report, Short Lives Can’t Wait shows that thousands of families whose children need the support of children’s palliative care face a postcode lottery as to whether they receive the right care. This is unacceptable.

Our research has found that:

• Whether the right care is available depends entirely on where you live: only a third of local areas in England are meeting the required standard for 24/7 end of life care for children and young people at home.
• There is an estimated £295 million funding gap for children’s palliative care services in England.
• There are significant workforce shortages and inconsistencies in the way support is planned and funded by local NHS and council bodies across the UK, which are not being held to account by the UK’s governments.

Together for Short Lives is calling for the UK’s governments, NHS bodies and local authorities to take immediate action for the UK’s 99,000 seriously ill children and their families. In England, we call for the parties contesting the general election to commit to this action too in the next parliament.

Far too often, children with life-limiting conditions with the most complex health needs – and their families – are experiencing care that is disjointed, uncoordinated and not provided when and where they need it. Across the UK, we have found huge variance both in the extent to which children’s palliative is being planned, funded and provided in ways
that meet national and regional standards.

We cannot accept this.

Short lives can’t wait

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.

Whether or not children with life-limiting conditions and their families can access the palliative care they need at home, out of hours and at weekends should never depend on where they live.

It cannot be right that the costs of some children’s palliative care services – particularly some specialist services provided by NHS trusts in England – are being absorbed by the NHS trusts themselves or funded from charitable sources without being fully reimbursed by ICBs.

Seriously ill children need action now

If these actions are not taken now, more children with life-limiting conditions and their families will be denied choice and control over their palliative care, particularly at end of life, as the number of cases of life-limiting and life-threatening conditions in children increases. By implementing guidance in full, valuable non-cash savings could be generated for the NHS, created by fewer unplanned, emergency admissions to hospital among children with life-limiting conditions, some of whom may prefer to access palliative care at home.

You can read a summary of our Short Lives Can’t Wait report, or read the full research and findings here.