Children’s hospice funding across the UK in 2024

Whether it be through short breaks for respite, help with accessing the right services or support through the loss of a child and beyond, children’s hospices across the UK are a crucial source of support for seriously ill children and their families.

Despite their importance, a lack of fair and sustainable funding for the long-term, coupled with rising costs, has meant children’s hospices are increasingly relying on their charitable income and reserves to provide lifeline care and support.

In England, recent years has seen local NHS and council funding plummet amidst ongoing uncertainty around the future of the £25 million NHS England (NHSE) funding stream. Accounting for nearly one fifth (16%) of children’s hospices’ charitable expenditure, this £25 million of NHSE funding is crucial to children’s hospices’ ability to provide care and support to seriously ill children and their families.

It is therefore vital that the UK Government maintains, ringfences and increases the £25 million of NHSE funding for children’s hospices by the rate of inflation – and returns it to being a centrally distributed funding stream. Crucial services, including respite and end of life care, will be cut if the government fails to maintain this funding.

Across the devolved nations, the need to match the increased Agenda for Change pay settlements for health professionals is driving the increase in children’s hospices’ care costs. As a result of these inflationary pressures, the proportion of the hospices’ charitable expenditure that statutory funding represents has fallen drastically.

This means that statutory funding previously provided to children’s hospices across Northern Ireland, Scotland and Wales is no longer sustainable.

Additional fair and sustainable funding is urgently needed to ensure children’s hospices are equipped to provide the care and support seriously ill children and their families need.

Increasing care

Our research shows that, since 2019/20, children’s hospices across the UK have 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 262% more children
• end of life care to 69% more children
• step down care to 70% more children.

Increasing expenditure

Whilst children’s hospices continue to provide vital care and support to seriously ill children and their families, recent years has seen inflation and the cost of recruiting and retaining skilled and experience staff soar.

As a result, children’s hospices’ costs are rising rapidly.

We have found that during 2023/24, children’s hospices across the UK witnessed their charitable expenditure increase by 12%, rising from £4.1 million in 2022/23 to £4.5 million in 2023/24. In England, when compared to 2021/22, children’s hospices’ charitable expenditure increased by 15% from an average of £3.6 million.

Two thirds (66.7%) of the UK children’s hospices attributed their increased costs to higher energy prices and higher costs of consumables, over a half (63.9%) of hospices claimed the higher expenditure was due to an increase in activity, whilst over three quarters (86.1%) attributed the increase to higher costs of recruiting and retaining staff.

On average, income for children’s hospices across the UK decreased slightly from £7.32 million in 2022/23 to £7.31 million in 2023/24.

Over half of children’s hospices reported net deficits in 2023/24 – with worse to come

As a result of a lack of long-term and sustainable statutory funding coupled with the increasing costs incurred when providing lifeline care to seriously ill children and their families, over a half (54%) of UK children’s hospices ended the 2023/24 financial year with a net deficit.

When extrapolated across all 39 children’s hospice organisations in the UK, we estimate a total shortfall of £8.5 million.

Looking ahead to 2024/25, the picture gets even worse, with nearly three quarters (72%) of UK children’s hospices forecasting a net deficit with the total shortfall across all 39 organisations estimated to reach just over £30 million.

Impact of cutting the grant in England

The £25 million of funding that NHSE provides to children’s hospices is a crucial and welcome contribution to the cost of providing care to children and families. On average, it accounts for approximately 16% of children’s hospices’ charitable expenditure.

Given how important it is, we are very concerned that the UK Government has not confirmed whether it will continue beyond 2024/25. Children’s hospices have told us that, if the £25 million was not available from 2025/26 onwards, there would be a profoundly negative impact on lifeline care and support:

• 82% would cut or stop providing respite care or short breaks.
• 70% would cut or stop providing emotional and/or psychological support.
• 45% would cut the end of life care they provide.

Local NHS and council funding for children’s hospices in England is falling

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

In 2023/24, children’s hospices received, on average, nearly 10% less funding from ICBs compared to 2022/23 and over a third (31%) less funding when compared to 2021/22. In 2022/23, each children’s hospice received an average of £524,278 from their local ICBs. However, in 2023/24, they received an average of £477,677.

Overall, ICB funding represents about 11% of the charitable expenditure incurred by children’s hospices in 2023/24, down from 13% in 2022/23.

We have also found that over the past year, local authority funding for children’s hospices has fallen by 26% from average of £149,939.92 in 2022/23 to £110,767.56 in 2023/24.

Local authority funding now accounts for approximately 2.6% of children’s hospices’ charitable expenditure.

Local NHS funding for children’s hospices in England continues to vary

From a series of freedom of information (FOI) requests of all 42 ICBs, we have found that in 2023/24, on average, ICBs spent £149.15 for every case of a life-limiting or life-threatening condition among children and young people aged 0-24 in their local area.

However, the amounts spent by each ICB varied by as much as £366.42 per child or young person. Whilst Bristol, North Somerset and South Gloucestershire ICB spent the most with an average of £397.01 per child or young person, Northamptonshire ICB spent the least with an average of £30.59 per case.

A similar picture across the devolved nations

In Northern Ireland, despite statutory funding increasing to just over £1.9 million in 2023/24, rising costs caused by inflationary pressures has resulted in a reduced number of beds at the children’s hospice.

In Scotland, inflationary costs, increased NHS pay awards and the expansion of services to meet demand have increased CHAS’ cost base. As a result, the £7 million of annual funding previously awarded by the Scottish Government now only amounts to 30% of CHAS’ total expenditure – a shortfall of £3 million per year.

Similarly, in Wales, despite the previous £880,000 awarded to the children’s hospices in 2022, inflationary pressures, including difficulties in recruiting and retaining staff stemming from the need to match increased Agenda for Change pay settlements has seen funding challenges exacerbate. As a result, the previous funding that was awarded no longer represents 21% of the hospices’ care costs and as such is no longer sustainable.

Urgent action is needed

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

In England, the UK Government should:

1. Review the way in which children’s hospice care is funded to ensure children’s hospices are equipped to provide lifeline care and support to seriously ill children and their families for the long-term.
2. Commit to maintaining, ringfencing and increasing the £25 million NHS England funding for children’s hospices by the rate of inflation – and returning it to being a centrally-distributed funding stream.
3. Hold ICBs to greater account for the way in which they commission children’s palliative care.
4. Direct ICBs to work with neighbouring ICBs in their region to plan and fund key services.
5. Ensure local authorities have the funding they need to comply with their legal duty to provide short breaks to families of seriously ill children.

In Northern Ireland, the Executive should:

1. Commit to providing additional and sustainable statutory funding to Northern Ireland Children’s Hospice for the long-term. This funding should be sufficient to cover 50% of the costs incurred in providing lifeline care and support to children and their families.
2. Ensure that any additional and recurrent statutory funding that is awarded is tied to and increases in line with the rising costs caused by inflationary pressures.

In Scotland, the Scottish Government should:

1. Re-commit to providing additional and sustainable statutory funding to Children’s Hospices Across Scotland (CHAS) for the long-term. This funding should be sufficient to cover 50% of agreed costs in providing lifeline care and support to children and their families.
2. Ensure that any additional and recurrent statutory funding that is awarded is tied to and increases in line with the rising costs caused by inflationary pressures.

In Wales, the Welsh Government should:

1. Commit to providing long-term, sustainable and fair funding to Tŷ Hafan and Tŷ Gobaith. This funding should be sufficient to cover at least 21% of the costs incurred in providing lifeline care and support to children and their families.
2. Ensure that any additional and recurrent statutory funding that is awarded is tied to and increases in line with the rising costs caused by inflationary pressures.

If this action is not taken, seriously ill children and their 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 the full report with all the data from our survey and freedom of information requests.

Previous reports can be found here

Children’s hospice funding in 2022/23
Local NHS funding of children’s hospices in England (2022/23)
Children’s hospice funding in 2021/22
Pushed to the limits: the impact of Covid-19 on children’s hospice funding 2019/20-2021/22
Statutory funding for children’s hospice and palliative care charities in England 2018/19
On the brink: a crisis in children’s palliative care funding in England