CHILDREN’S HOSPICE SERVICES UNDER THREAT AS NHS FUNDING FALLS

ellenor in Gravesend, Northfleet is joining a national campaign to protect £25 million of crucial NHS funding from NHS England for children’s hospices.

ellenor is joining a national campaign to protect £25 million of crucial NHS funding from NHS England for children’s hospices.

The calls to protect the funding follow on from a new report from Together for Short Lives, Short Lives Can’t Wait: Children’s Hospice Funding in 2024, which revealed that if NHS England’s ringfenced funding for children’s hospices is not renewed:

• 82% would cut or stop providing respite care or short breaks.
• 45% would cut end of life care.
• 64% would cut or stop providing hospice at home services.

The findings, also show how statutory funding has declined while children’s hospices contend with growing running costs. Inflation, higher energy prices and the rising cost of recruiting and retaining skilled staff means that, on average, children’s hospices in England spent 15% more in 2023/24 compared to 2021/22.

Yet during this time local NHS bodies and councils have cut funding for children’s hospices in England. On average, local NHS bodies spent a third (31%) less on children’s hospices in 2023/24 than they did in 2021/22. This is despite them having a legal duty to commission children’s palliative care and a growing number of babies, children and young people living longer.

Freedom of information requests (FOIs) conducted by the charity also showed a continuing postcode lottery in local NHS spending on children’s hospices, with ICB funding varying by as much as £366 per child in 2023/24. While Bristol, North Somerset and South Gloucestershire ICB spent an average of £397 per child, Northamptonshire ICB spent just £31 per child.

Every year, ellenor provides home care for adults and children, including specialised oncology and end-of-life services. We serve a population of over 500,000 in Kent, delivering more than 90% of our services at home. Our comprehensive care supports children of all ages with life-limiting and life-threatening conditions. In Dartford, Gravesham, and Swanley, we offer clinical nursing support, working closely with families to deliver care where they prefer, often in their own homes, ensuring children receive care in familiar surroundings. Additionally, across Dartford, Gravesham, Swanley, and Bexley, we provide a range of respite and wellbeing services, such as Play Therapy, Music Therapy, Counselling, and Bereavement support.

As part of our survey, we also asked children’s hospices about the funding they received from local authorities – 32 children’s hospice organisations in England provided us with this information.

Under the Children Act 1989, local authorities are required to provide services designed to assist family carers of disabled children ‘to continue to provide care, or to do so more effectively, by giving them breaks from caring.’ In its survey, Together for Short Lives found that funding from local authorities fell sharply by 26% between 2022/23 and 2023/24. Over a half (53%) of the children’s hospices that responded did not receive any funding from their local authority during 2023/24 and among the remaining hospices that did receive funding, it varied from £6,000 to £1,105,000.

Since July 2023, integrated care boards (ICBs) have been responsible for planning and funding NHS care in England. They replaced clinical commissioning groups (CCGs), which previously had this role.

In 2021/22, on average, children’s hospices received £688,829.70 from CCGs (now known as ICBs). In 2023/24, funding received from ICBs (previously known as CCGs) equalled £477,676.59. This represents a 31% decrease on the funding received in 2021/22.

In response to our survey, 32 children’s hospice organisations in England told us about their local NHS funding. In 2022/23, children’s hospices received an average of £524,277.64.v However, in 2023/24, they received an average of £477,676.59.

Families like Ciara’s, who receive respite care from ellenor An Emergency Service of Compassion  express profound gratitude. Dad Grant says, “ellenor’s respite care allowed Mags and me to focus on other essential aspects like quality time with Jonathan. While he’s been incredibly understanding and supportive, Ciara’s medical needs have always demanded our constant attention. Respite care gave us the time we desperately needed, as a family, to take some pressure off ourselves.”

Central funding for children’s hospices like ellenor in England has been in place since 2006/7. Yet the neither the UK Government nor NHS England have committed to maintaining the money beyond March 2025.

The uncertain future of the vital funding comes as over half (51%) of children’s hospices in England report a deficit – a number set to grow to nearly three quarters (69%) in 2024/25, should funding continue to fall. Together for Short Lives estimates the funding shortfall will reach just over £25 million in 2024/25.

The charity has written to the leaders of the parties contesting the general election, urging them to commit to a £25 million centrally funded, ringfenced children’s hospice grant for the long-term, should they form the next UK Government.

Andy Fletcher, Chief Executive of Together for Short Lives, said: “On the eve of the general election, our children’s hospices are at a turning point. Our report paints a bleak picture of rising costs, local funding cuts and the prospect of lifeline services for seriously ill children being hugely reduced unless the next government intervenes urgently.

“For 18 years, families have relied on the central NHS funding for children’s hospices. The parties must commit to continuing it for the long-term as a £25 million ringfenced grant which increases with the rate of inflation.

“And more widely, amid a £295m NHS children’s palliative care funding gap, the next Prime Minster must end the sticking plaster approach to funding these crucial services. We need a review which leads to a more permanent, sustainable funding solution.

“Many seriously ill children will not be alive the next time the UK goes to the polls. We have one chance to get it right for them. They do not have time to wait.”

Michelle Kabia, Chief Executive for ellenor, said:

"ellenor is deeply concerned about the impact of declining NHS funding on children’s hospices across England. Our services provide vital support to families like Ciara’s, ensuring they can access crucial respite and end-of-life care in their own homes. It’s crucial that the next UK Government commits to safeguarding the £25 million NHS grant for children’s hospices, allowing us to continue delivering compassionate care to seriously ill children and their families."