LOCAL CHARITY, JESSIE MAY, HIGHLIGHTS FUNDING GAP IMPACTING HOME PALLIATIVE CARE FOR SERIOUSLY ILL CHILDREN

A new report reveals the estimated gap in NHS funding for children’s palliative care in England has grown from £295 million to £310 million in just one year.

• The gap – which is just 0.16% of NHS England’s annual budget – is one of the main barriers preventing seriously ill children and their families from accessing the care they need; less than one fifth of local NHS areas in England formally plan and fund 24/7 end of life care for children at home.
• Jessie May, Children’s Hospice at Home, is joining leading children’s palliative care charity Together for Short Lives in calling on the UK Government to review the way children’s palliative care is funded and build a system that lasts for seriously ill children. 

Local charity Jessie May is joining a national campaign calling on the UK Government to review the way children’s palliative care is funded.  

The calls to review children’s palliative care funding follow on from a new report from Together for Short Lives, Built to Last? The State of Children’s Palliative Care in 2025, which revealed 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 (a process known as commissioning). It means that families receive very different levels of support depending on where they live.  

Children’s hospices are a crucial source of support for families caring for seriously ill children. However, with costs rising at an exponential rate, the lack of equitable, sustainable and long-term funding is threatening their ability to continue providing this care. 

While the announcement that £26 million of NHS funding will be made available for children’s hospices in 2025/26 is deeply welcome, it is still only a short-term solution. Furthermore, there is 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. 

Jessie May supports 187 children and their families at home, offering specialist nursing care and bereavement support. Margot, born eight weeks premature and diagnosed with the rare condition Trisomy 9 Mosaicism at just 19 days old, is one of the children who has benefitted from Jessie May's support. 

Margot’s condition is extremely rare, with only 100 known cases worldwide. Following her diagnosis, the Griffiths family faced uncertainty and a difficult journey ahead, however Jessie May’s consistent, familiar care has proved invaluable, providing continuity that hospitals can’t offer. Over time, Jessie May’s nurses, Lois and Ash, have become trusted, familiar faces – offering expert care with compassion, consistency, and genuine kindness. 

Greg, Margot’s dad, says, “I can’t imagine life without Jessie May – they have become an integral part of Margot’s life, our lives and they give us that huge love and support that is invaluable. You’ve only got to see in terms of how they have integrated with our family and the development and support they give Margot for the time being. It’s a very unique service that they offer and I would encourage anyone to support them.” 

Margot’s story underscores the urgent need for increased funding, as a £310 million gap in children’s palliative care funding leaves many families without essential support. Jessie May calls on the government to address this funding shortfall to ensure that all families, like the Griffiths, can access the care they need, allowing them to focus on making lasting memories rather than fighting for support. 

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. 

In practice, it means that families living in Cheshire and Merseyside caring for a seriously ill child stand a much better chance than families in Devon in having their child die at home, surrounded by their loved ones, if that is what they wish. 

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.   

Nick Carroll, Chief Executive of Together for Short Lives said: “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.   

“The UK Government must act urgently by holding a full review into the way children’s palliative care is planned and funded in England. We know that public finances are under pressure, yet the money needed to fix the issues across children’s palliative care is tiny when compared to the annual NHS England budget. 

“What we need is the will of those in power to act – so that families can spend less time fighting to get the care their child needs and more time making the most of the short time they have together. If ministers are to achieve their aims of shifting care from hospitals into the community in the next decade, we urgently need a children’s palliative care system that’s built to last.” 

Daniel Cheesman, CEO at Jessie May said: “This report highlights the stark reality that many families with seriously ill children feel abandoned and unsupported, and it’s a situation we see far too often. At Jessie May, we provide specialist care to families at home, but we know that not all families have access to the same level of support. It’s crucial that we work together to ensure every family, no matter where they live, has the support they need to care for their child and make the most of the precious time they have together. However, to continue our vital work and extend our services to more families in need, Jessie May urgently requires more funding to ensure we can keep offering the high level of care these families deserve.”