Local NHS funding of children’s hospices in England
NHS funding for local children’s hospices in England varies by as much as £483 per child in 2022/23. We have found a huge variance in local NHS spending on lifeline care for seriously ill children, as well as a lack of understanding on the number of children who need palliative care. We are calling urgently for fair, long-term, NHS funding to sustain crucial children’s hospice services.
Earlier in 2023 we submitted freedom of information (FOI) requests to all 42 local NHS integrated care boards (ICBs), which are responsible for allocating funding to health services in their areas. We asked the ICBs:
- how much money they had spent on hospice care for children and young people with life-limiting or life-threatening conditions in 2022/23
- how many children and young-people in their area had accessed children’s hospice care
- and how many children or young-people in their area could benefit from children’s hospice care
Individual ICB FOI responses are available here.
We collated the results, and shared them with local children’s hospices for their perspectives. We also compared local NHS funding with independent research on the number of children and young people with life-limiting or life-threatening conditions in each area. The full research can be found in our report The Deep Disparity in NHS Funding for Children Who Need Hospice Care.
Huge variance in spend
In 2022/23, Norfolk and Waveney spent the highest amount per child of any ICB, averaging £511 for every child in the area with a life-limiting condition. In contrast the lowest spending ICB, South Yorkshire, spent an average of just £28 per child.
ICBs have a legal duty to commission palliative and end of life care under the Health and Care Act 2022. Yet six ICBs (14%) were unable to say how much money they spent on children’s hospice care at all in 2022/23.
“The variation in NHS funding for children who need hospice care is a real concern,” says our CEO Andy Fletcher. “In some areas, it bears little relation to the local need for this lifeline support, which helps seriously ill children and their families make the most of the time they have.”
ICB funding of children's hospices 2022/23
This map shows how the total funding provided to children’s hospices in England in 2022/23 varied by ICB.
ICB children's hospice funding per child
This map shows how the total funding provided to children’s hospices in England in 2022/23 per child or young person with a life-limiting or life-threatening condition varied by ICB.
Calculating spend per child by ICB area
While we cannot determine the exact demand for active hospice care among children and young people, we do know how many children and young people aged 0-24 with life-limiting conditions live in each ICB area. We used the studies below to estimate the spend per child in each ICB local area.
- Fraser LK, Gibson-Smith D, Jarvis S, Norman P, Parslow RC. 2020. ‘Make Every Child Count: Estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom.’
- Fraser LK, Gibson-Smith D, Jarvis S, Norman P. 2021. ‘Making Every Young Person Count: Estimating current and future prevalence of young people with life-limiting conditions in England.’
Huge gaps in data
The research also revealed that only 13 ICBs (31%) were able to say how many children and young people with life-limiting or life-threatening conditions who live in the areas they serve accessed hospice care in 2022/23. Among those that did, the average number of children and young people accessing a children’s hospice was 318 per ICB.
However, the number of children identified by each ICB varied wildly. The lowest was North Central London with just 13. The ICB that claimed the most children and young people accessing hospice care was Mid and South Essex with 1,848.
Noah’s Ark Children’s Hospice, which operates in North Central London, has told us that the 13 children and young people that North Central London ICB identified is only a fraction of the 229 children and young people in the ICB area that Noah’s Ark actually supported during that period. The children’s hospice states that this clearly shows the low level of funding the ICB provides relative to the care and support that Noah’s Ark delivers.
In contrast, North East London, one of North Central London’s neighbouring ICBs, stated that 1,284 children and young people accessed children’s hospice care in its local area in 2022/23.
And although ICBs in England are responsible for ensuring that the level of NHS-funded palliative and end of life care, including children’s hospice care, in their local areas meets the needs of seriously ill children and their families, worryingly our FOIs found that almost all of the ICBs in England couldn’t say how many children in their area need palliative care, with just three out of 42 being able to answer this question.
ICBs in England are responsible for ensuring that the level of NHS-funded palliative and end of life care, including children’s hospice care, in their local areas meets the needs of seriously ill children and their families. Yet the FOIs found that just three ICBs could say how many children in their area need palliative care.
Fair long-term funding required
Our research clearly shows that there is massive variance in the levels of funding offered for children and young people with palliative care and hospice needs, and many ICBs have inadequate data to accurately assess populations of need in their local areas. Together for Short Lives believes that this is inequitable and unsustainable, and we will continue to call for urgent action to ensure that all children, young people and their families get the right support when and where they need it.
“There is a £300 million NHS funding gap in children’s palliative care in England,” says Andy Fletcher, CEO of Together for Short Lives. “While the recent commitment of £25 million for children’s hospices is welcome, it is a short-term fix.”
We’d like to see politicians take urgent action. Ministers should confirm how much of the £25 million each children’s hospice will receive in 2024/25 as a matter of urgency – in addition to how and when they will receive it.
We also call on the UK Government – and all the parties that will contest the next general election – to commit to:
- Multi-year long term NHS funding for children’s palliative care in England that fills the £300 million gap that we have identified and sustains lifeline services including children’s hospices. This should include a commitment to maintaining ringfenced NHS England funding for children’s hospices beyond 2024/25 which increases by at least the rate of inflation each year.
- A dedicated long-term strategy in the NHS Mandate that addresses the palliative care needed by children and young people.
- Direct NHS England to hold ICBs to greater account for the way in which they commission children’s palliative care, including the way they work together to plan and fund these services at regional level.
- Direct ICBs to work with neighbouring ICBs in their region to plan and fund these services.
“If the UK Government, NHSE and ICBs fail to take this action, children and families’ access to crucial hospice and palliative care services could be put at risk,” says Andy. “Even more pressure will be loaded on to already overstretched emergency NHS services. Seriously ill children do not have time to wait for hospice and palliative care services to receive the sustainable funding they desperately need.”