New research we are releasing today reveals that 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 the year we submitted freedom of information (FOI) requests to all 42 of the local NHS integrated care boards (ICBs) that 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
We collated the results, and shared them with local children’s hospices for their perspectives. We also compared population numbers with independent research on the numbers of children with palliative care needs. The research was eye opening.
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.”
Massive 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
Earlier this year we campaigned to save the Children’s Hospice Grant, and we welcome the commitment made in the Summer by Minister of State for Social Care Helen Whately to provide £25 million of NHS funding for children’s hospices in 2024/25. However, neither the UK Government nor NHS England has not yet confirmed how it will be distributed or the future of this funding beyond 2023/24.
Children’s hospices have been concerned at the prospect of the £25 million NHS England Children’s Hospice Grant being given to ICBs to distribute in future, and our new research supports these concerns – if the grant is handed to ICBs to distribute then crucial safeguards are necessary to ensure the Grant reaches children’s hospices.
But in any case the grant itself is not enough to ensure sustainable long-term funding for children’s palliative care. “There is a £300 million NHS funding gap in children’s palliative care in England,” says Andy Fletcher. “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.
- The political parties contesting the next UK general election should also now commit to removing the inequality in local funding for children’s palliative care so that every family caring for a seriously ill child can access the support and care they need – when and where they need it.
“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.”
You can read and download the full report here, and you can contact your MP to ask what they will do to ensure fair long-term funding for children’s palliative care here.
