The state of children’s palliative care in 2025

Children’s palliative care provides vital support to seriously ill children and their families—helping them spend precious time together, create lasting memories, and access the care they need. Yet, systemic challenges still leave too many families struggling. Simply put, the system is failing too many children and is not built to last.

Our new report, ‘Built to Last?’ shows that thousands of families caring for seriously ill children face a postcode lottery when accessing high quality children’s palliative care.

This is particularly stark in children and families’ access to 24/7 end of life care at home, provided by nurses and supported by advice from specialist consultants.

Our research has found that:

• Despite improvements in the past year, less than a fifth (19%) of integrated care boards (ICBs) in England currently commission services on a formal basis that meet the 24/7 end of life care at home standard.
• In Northern Ireland, only one health and social care trust partially meets this standard. In Scotland, while some NHS Boards have made progress in expanding 24/7 support, others have not. In Wales, only two local health boards—Betsi Cadwaladr and Hywel Dda—formally provide this level of care.
• There is an estimated £310 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.

Explore our interactive maps

Our maps reveal the postcode lottery in children’s palliative care across the UK. They highlight where 24/7 end of life care at home—aligned with National Institute for Health and Care Excellence (NICE) quality standards—is being formally planned, funded, and provided.

These maps are based on responses to Freedom of Information (FOI) requests from:

• Integrated care boards (ICBs) in England
• Health and social care trusts in Northern Ireland
• Local health boards in Wales
• Information for Scotland was gathered through discussions with key stakeholders.

We’ve also overlaid Westminster parliamentary constituencies, so MPs can see whether these standards are met in their area. We urge politicians to use this data and work with the UK government to ensure seriously ill children can access high-quality palliative care—whether at home, in hospitals, or in children’s hospices.

Read the full FOI responses in our Built to Last report.

➡️ Use the arrows below to explore the maps.

Seriously ill children need action now

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.

Urgent action needed

• Through the NHS 10-Year Plan, commit to review the way in which children’s palliative care is planned and funded, to identify how the £310 million annual gap in NHS spending on children’s palliative care in 2025/26 can be filled.
• 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.
• Commit to action across the UK to use the existing children’s palliative care workforce more equitably—and increase the number of professionals who are educated and trained with the skills and experience to provide palliative care to children with life-limiting conditions across a range of different roles.
• Fund lifeline voluntary sector providers in England, Northern Ireland, Scotland and Wales—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 funding for children’s hospices beyond 2025/26 as part of a transition to a sustainable funding system.
• In addition to filling local funding gaps, hold local NHS bodies and councils to greater account for implementing the existing policy frameworks relating to children’s palliative care.

End the postcode lottery of 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.

The cost of inaction

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 our full report here.

Previous reports and submissions can be found here

Short lives can’t wait: the state of children’s palliative care in 2024
A workforce in crisis: children’s palliative care in 2019
The state of the UK children’s hospice nursing workforce: A report on the demand and supply of nurses to children’s hospices: April 2017
Reforming healthcare education funding: creating a sustainable workforce: A written submission from Together for Short Lives
Facing the facts, Shaping the Future: A response from Together for Short Lives