Brian House Children’s Hospice in Blackpool 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[i]. 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.
- 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
- Brian House Children’s Hospice 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.
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.
Last year, Brian House Children’s Hospice supported 86 seriously ill children and their families, with 29 new children referred for its specialist hospice care, providing respite care and support through the day and overnight.
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.[ii] 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.[iii] 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.”
David Houston, CEO at Brian House Children’s Hospice, said: “We welcome the insight from Together for Short Lives and are proud to stand alongside them as they call for change in the way local children’s hospices, like ours, are funded.
“No family should have to face alone the challenges of having a child who is life-limited, and access to good and consistent hospice care should not be dependent on where someone lives.
We know all too well the impact of decreasing government funding on local hospice care, and now is the time for change as hospices across the UK face the perfect storm of financial pressures including real-term reductions in statutory funding, inflationary cost increases, and rising demand for our services.”
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The Report also identifies:
Workforce shortages putting additional pressure on services
The charity also found serious gaps in the specialist workforce needed to provide adequate paediatric palliative care in England. Where there should be between 40 – 60 fulltime paediatric palliative care consultants, there are only around 24. Where there should be nearly 5,000 community children’s nurses to meet safe staffing levels[iv], there are only 973 currently employed by the NHS.[v]
There are only 21.4 full-time equivalent GRID-trained paediatric palliative medicine consultants in the UK, far below the 40-60 required, according to the Royal College of Paediatrics and Child Health.
A lack of accountability and leadership challenges
The charity has also found that despite an array of clear policy imperatives, significant disparities remain in the way these policies are being implemented. Despite increasing slightly, the proportions of ICBs with relevant children’s palliative care service specifications and/or an Ambitions for Palliative and End of Life Care self-assessment continue to vary drastically.
While the UK Government currently holds NHSE to account through the mandate to the NHS, there is no clear mechanism to ensure NHSE applies the same level of scrutiny to how ICBs meet their legal duty on children’s palliative care.
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About Brian House Children’s Hospice
Brian House is the only specialist children’s hospice for the Fylde coast, offering unique, expert care and support that makes a huge difference to the most seriously ill and vulnerable children in our community.
The purpose-built hospice, which forms part of Trinity Hospice, allows children with incredibly challenging medical needs and conditions to have the chance to live life to the full; to play and have fun as every child should.
Brian House offers respite care whether it’s for a day, a night, a weekend or even longer for local families, as well as group support for the whole family. Brian House is also there for expert end-of-life care and bereavement support.
All of Brian House’s services are provided completely free of charge to every family which needs them, but with running costs of more than £1.5million and little help from the government, it relies on the support and generosity of people and organisations in the community.
About Together for Short Lives
Seriously ill children and their families deserves the chance to live a full life, supported by care that enables them to thrive.
But for many, it’s a lonely and isolating experience. Parents and siblings struggle in a system that doesn’t meet their uniquely challenging needs.
That’s why we’re here – to make sure they can access high quality children’s palliative care, when and where they need it. Step by step, hand in hand, day by day, so that no one has to face living through their child’s short life – and death – alone.
Together we support families through difficult times, offering lifeline practical, emotional and financial help. And, when they’re ready, we connect them to our incredible community – people who really get what they’re going through.
Together we unite our sector. We help professionals and services to pool their knowledge and expertise, to deliver outstanding children’s palliative care. We are collaborative and inclusive, we push boundaries and lead the conversation to find new and better ways of doing things.
Together we campaign to make sure that seriously ill children and their families get the care and support they need. We rally the community and give people a voice. And where the system falls short, we demand change.
Supporting, uniting, campaigning, together. Because time is short.
We are Together for Short Lives.
www.togetherforshortlives.org.uk
[i] Based on the specialist and core professionals that NICE state should comprise children’s palliative care multidisciplinary teams – and the population that needs access to them – we estimate that the NHS should spend approximately £396.5 million every year to meet this standard in 2025/26. We believe that the NHS will spend £86.5 million in 2025/26, which means that there will be a £310 million funding gap in 2024/25. You can view the model we have used for calculating the gap here.
[ii] In total, all 42 ICBs responded to our request
[iii] To improve our understanding of the needs of families caring for seriously ill children and the areas where they are going unmet, we commissioned DJS Research to conduct exploratory research. To gather data and information, DJS adopted a two-step approach. Step one involved an online survey completed by 45 different families, with each survey taking approximately 10-15 minutes to complete. Step two then saw DJS conduct 10 interviews with 10 different adults, each lasting for one hour. Of the families that took part in the research, nearly three quarters (69%) were currently caring for a child with a life-limiting or life-threatening condition, one quarter (24%) were bereaved and almost one tenth (7%) were caring for a child with complex care needs.
[iv] As recommended by the Royal College of Nursing – Royal College of Nursing. (2012). Mandatory Nurse Staffing Levels. Available at: https://www.rcn.org.uk/-/media/royal-college-of-nursing/documents/policies-and-briefings/uk-wide/policies/2012/0312.pdf.
[v] NHS Digital. (2025). NHS Workforce Statistics – October 2024. Available at: https://digital.nhs.uk/data-and-information/publications/statistical/nhs-workforce-statistics/october-2024.
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