A new national report has revealed a deeply troubling reality: the funding gap for children’s palliative care in England has grown to £310 million, up from £295 million in just one year. This shortfall—just 0.16% of NHS England’s annual budget—is leaving families of seriously ill children without access to the end-of-life care they need and deserve.
Jigsaw, Cumbria’s Children’s Hospice, is joining forces with leading charity Together for Short Lives to call on the UK Government to urgently review how children’s palliative care is funded. The report, Built to Last? The State of Children’s Palliative Care in 2025, highlights the devastating impact of inconsistent and inadequate funding across the country.
“We see every day the impact we have for babies, children and young people living with medically complex conditions which will shorten their lives,” said Julie Clayton, Chief Executive of Jigsaw. “Yet most of our care is paid for by our communities. We would like to see a much more joined-up and resilient approach for our families.”
The Reality in Cumbria
As the only children’s hospice in Cumbria, Jigsaw supports an average of 35 seriously ill children each month, offering vital respite and specialist care. In 2024 alone, Jigsaw provided 814 days and 368 nights of care, giving families time to rest, recharge, and make precious memories.
A Postcode Lottery for Families
The report reveals that less than one in five NHS areas in England formally plan and fund 24/7 end-of-life care at home. This means that access to vital nursing support and specialist advice varies dramatically depending on where a family lives.
“Families in Cheshire and Merseyside are far more likely to receive this care than those in Devon,” the report notes. “This postcode lottery is leaving many parents feeling abandoned and overwhelmed.”
The emotional toll is significant. According to the report:
- Only 50% of families feel well supported after diagnosis.
- Nearly 47% say they receive no help with practical or financial matters.
- Over 35% report a lack of emotional or psychological support.
“For too long, seriously ill children and their families across England have been failed by a system which has been persistently underfunded and under prioritised,” said Nick Carroll, Chief Executive of Together for Short Lives. “We need a children’s palliative care system that’s built to last.”
A Call to Action
While the government’s pledge of £26 million for children’s hospices in 2025/26 is welcome, it remains a short-term solution. Jigsaw and Together for Short Lives are urging the government to commit to a full review of children’s palliative care funding—to ensure that every child, no matter where they live, can access the care they need.
