Children’s hospice funding in England

Children’s hospices across England provide vital care and support to children and young people and their costs are rising rapidly. NHS England (NHSE) plans to continue £25 million of grant funding for children’s hospices in 2024/25.

We welcome this development, although we await news of how the money will be distributed to children’s hospices. We continue to call for children’s hospices to have access to equitable, multi-year NHS funding to make sure the lifeline care and support they provide is sustainable for the long-term.

In April and May 2023, Together for Short Lives asked children’s hospices across the England how they were funded in 2022/23, what care they offered, and how this might change in the coming year. Of England’s 34 children’s hospice organisations, 29 responded to our survey.

Increasing care

Our research shows that, last year, children’s hospices provided an increasing level of around the clock care and support that should be funded by NHS in hospices and in family homes, including:

• services to manage symptoms, including pain, to 51% more children
• short breaks for respite to 9% more children and families
• end of life care to 4% more children.

Increasing expenditure

The costs of providing this care grew by 13% from £3.61 million in 2021/22 to £4.07 million in 2022/23. Nearly all (93%) of children’s hospices say this resulted from the higher costs of recruiting and retaining staff. Two thirds (66%) attributed them to higher energy prices. Just over half (59%) said costs were higher because they had increased their activity.

On average, income for children’s hospices in England grew by 2% from £7.18 million in 2021/22 to £7.32 million in 2022/23, driven in part by the welcome increase in the NHSE Children’s Hospice Grant over the same period.

The grant is a crucial and welcome contribution to the cost of providing lifeline hospice care to children and families. However, NHS England wrote to children’s hospices in April to tell them that this year (2023/24) will be the final year of the grant – and that local integrated care boards (ICBs) would be responsible for providing all of their NHS funding thereafter.

Patchy NHS funding

Currently ICB funding is patchy and nowhere near the level that will sustain the crucial hospice services that children and families need.

In 2022/23, children’s hospices received an average of £532,923 from NHS clinical commissioning groups and ICBs, which is 23% less than they received from CCGs (the predecessors of ICBs) in 2021/22.

Overall this funds 13% of children’s hospices’ charitable expenditure, but there is wide variance between individual children’s hospices: three children’s hospices received over 30% of their charitable expenditure from CCGs/ICBs, whereas in contrast 10 others received 5% or less of their charitable expenditure from CCGs/ICBs. While models of children’s hospice services vary between providers, this level of variation in funding cannot be justified.

Impact of cutting the grant

Children’s hospices have told us what the impact on their services would be if the Children’s Hospice Grant was not available from 2024/25 onwards as a ringfenced grant from NHSE. The results are very worrying:

• Nearly two in five (38%) children’s hospices would cut end of life care they provide. One would stop providing it altogether.
• Nearly four fifths (79%) would cut the respite or short breaks they provide. One would stop providing them altogether.
• Two thirds (66%) would cut the hospice at home services they provide. One would stop providing them altogether.

Urgent action needed

As a result of growing costs, over four fifths (86%) of children’s hospices forecast a net deficit in 2023/24. Just 14% expect to make a surplus.

We need urgent action to make sure that children’s hospice care is in England is sustainable for the long-term – and funded on a more equitable basis:

1. Protect, ringfence and increase the NHS England Children’s Hospice Grant by the rate of inflation
2. Hold ICBs to account to make sure that all seriously ill children in England and their families should be able to choose to receive palliative care from children’s hospices.
3. Take local action at the ICB level to commission children’s hospice and palliative care services in a way which is consistent with their legal duty and existing NICE standards. NHS England should regularly monitor this and hold ICBs to account if they fail to do so.
4. Government should meet the annual £573 million funding gap in social care for disabled children in England identified by the Disabled Children’s Partnership to make sure that short breaks for respite for families of seriously ill children are sustainable for the long-term.

If the UK Government, NHSE and ICBs fail to take this action, seriously ill children and families’ access to crucial hospice and palliative care services like end of life care and short breaks could be put at risk. Seriously ill children do not have time to wait for hospices to receive this reassurance.

Read a full summary report with all the data from our questionnaire.