Jigsaw, Cumbria’s Children Hospice is joining a national campaign calling on the Government to review the way children’s palliative care is funded.
A new report from Together for Short Lives, Built to Last? The State of Children’s Palliative Care reveals that the funding gap for children’s palliative care in England has grown by £15 million in one year, bringing it to £310 million.
The gap is 70 times smaller than NHS England’s budget increase in 2024/25 (£22.6bn) and just 0.16% of its annual budget.
The charity has identified the gap in its new report Built to Last? The State of Children’s Palliative Care in 2025 as one of the main reasons for the postcode lottery that families face in getting their child the palliative and end of life care they need.
Other factors include workforce shortages and a lack of leadership and accountability at a local level to make sure key standards are met.
Across the whole of England, Together for Short Lives has found significant differences in the way children’s palliative care is planned and funded. It means that families receive very different levels of support depending on where they live.
Jigsaw said while the announcement that £26 million of NHS funding will be made available for children’s hospices in 2025/26 is deeply welcome, it was still only a short-term solution.
It added there was still a much wider gap in need of filling to ensure hospices are equipped to continue providing lifeline palliative and end of life care services.
Every year, Jigsaw supports an average of 35 seriously ill children each month and their families.
As the only children’s hospice in Cumbria, children and young adults come from across the whole county, up to the age of 25.
Jigsaw offered 814 days of care and 368 nights of care in 2024.
Its services allow children with the most medically complex conditions to have some time away from home. This gives time for families to rest and recharge and spend quality time with other siblings. It’s about making the most of life for children and young people and giving them experiences and creating memories which will last a lifetime.
Julie Clayton, chief executive of Jigsaw Cumbria’s Children’s Hospice, said: “We see every day the impact we have for babies, children and young people living with medically complex conditions which will shorten their lives.
“Yet most of our care is paid for by our communities.
“We know there are real challenges for families in terms of equity and access to specialist care here in Cumbria and we play a key part alongside other services supporting children with palliative care needs and supporting their families to access the care they need.
“We would like to see a much more joined-up and resilient approach for our families.”
Postcode lottery
Access to 24/7 end of life care at home including vital nursing support and specialist advice from a trained consultant is far too inconsistent from region to region.
Together for Short Lives’ freedom of information (FOI) requests issued to England’s 42 integrated care boards (ICBs) have found that less than a fifth (19%) formally commission this level of care. Despite an increase during the last year, a third (33%) of ICBs are still failing to meet this national standard.
Families left feeling abandoned and overwhelmed
Together for Short Lives’ report highlights the impact of the postcode lottery on seriously ill children and their families – many of whom report feeling abandoned and overwhelmed after their child is diagnosed.
Only half (50%) of families that responded to the survey reported feeling well supported, while nearly half (47%) feel like they have no help with practical or financial matters. Over a third (35%) feel like they don’t get enough emotional or psychological support themselves.
