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

Ahead of the next UK general election, we are calling upon all political parties and candidates to commit to policies aimed at making sure everyone affected by dying, death and bereavement gets the best possible care and support.

We are proud to work jointly with friends and partners across our sector to ensure that politicians from all parties are aware of the challenges we are facing in providing high quality end of life care in the UK. As representatives and providers of end of life care and bereavement support in communities across the country, we have worked together to identify solutions that will make sure families who need us are well supported long into the future.

Palliative and end of life care is a vital part of a healthcare system, and we look forward to working with NHS and government partners to achieve our five goals:

1. Deliver a new funding solution for hospices and palliative and end of life care to end the postcode lottery in access.
2. Introduce a national delivery plan for palliative and end of life care in every nation to support delivery of local services.
3. Guarantee that palliative and end of life care services meet each individual’s needs, including those of people dying at home.
4. Act to ensure that nobody dies in poverty and tackle inequalities in palliative and end of life care.
5. Improve support for families and carers of people with a terminal illness.

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.