Fears raised over the future of Bristol's children's hospice Jessie May as it is forced to use reserve funds

Charity Together for Short Lives said the future of Bristol’s Jessie May Hospice, which has been helping children with life limiting conditions for 30 years, remains “unclear” after uncertainty around funding has forced it to draw on its reserves and rely on voluntary income.

The charity has now warned seriously ill children may be denied end-of-life care without further funding for hospices.

In a report, Together for Short Lives said hospices are being forced to rely on donations and funds raised from charity shops to prop up services as estimates show costs for hospices have risen by 34% since 2021.

A new poll of 30 hospices in England found almost nine in 10 (89%) expect their costs to exceed their income this financial year.

The charity warned seriously ill children may die without accessing end-of-life care, symptom management and emotional and psychological support as a result.

Laura McArthur, from Bristol, relies on the Jessie May Hospice in the city for support in caring for her seven-year-old son Archie, who has cerebral palsy.

Ms McArthur said: “Jessie May has known Archie since he was six months old.

“They have been there through it all.

“His needs are so complex, requiring around-the-clock care – at times it can be very difficult.

“Jessie May come and look after Archie so I can have a short break.

“As the years go on, caring for a disabled child is both physically and mentally exhausting. The truth is that I couldn’t live without their support.”

The report by Together for Short Lives, states inflation, workforce shortages, and rising demand for care are stretching services to “breaking point”.

NowTogether for Short Lives is urging ministers to increase ring-fenced NHS funding for children’s hospices in England from £26 million in 2025/26 to £30 million by 2029/30.

It said hospices have said that without this funding they would have to cut back on respite care and short breaks, emotional and psychological support, as well as end-of-life care.

Nick Carroll, chief executive of Together for Short Lives, said: “As ministers try to shift greater levels of healthcare from hospitals into communities, our amazing children’s hospices are doing more than ever before to provide crucial support to seriously ill children and their families.

“But as their costs soar, they are having to rely even more on the generosity of the public amid patchy and unsustainable funding from the NHS.

“To expect the complex and often specialist healthcare these families need to be funded by charity shops and donations is wrong – we wouldn’t accept this for other parts of our health and care system, so to add more uncertainty to families’ lives when many simply don’t know how long they have left with their children is unacceptable.”

As well as providing end-of-life care, hospices also offer services including emergency support, symptom management and short breaks for respite.

Mr Carroll added: “As it finalises its NHS 10-year plan, the UK Government must put in place a long-term, sustainable funding model for children’s palliative care in England.

“Immediately, ministers should act to protect and maintain the NHS children’s hospice grant and put it on a path to £30 million by 2030.

“Only by doing so can the Government make sure lifeline services are not cut for seriously ill children, which could deny many the choice of accessing end of life care from a children’s hospice.”

A Department of Health and Social Care spokesperson said: “The Government recognises the incredible work that children and young people’s hospices do across the country.

“We are investing £100 million to improve hospices facilities, and a further £26 million specifically for children’s hospices this year, the biggest investment in hospices in a generation.

“We are also working to make sure the palliative and end of life care sector is sustainable in the long-term and are determined to shift more healthcare out of hospitals and into the community through our Plan for Change.”

A spokesman for Jesse May said: “ We urgently need your help to keep this life-changing service safe for children like Margot, Aqsa, and Archie and their families.

“Please help us close our £300,000 funding gap by donating to our crisis campaign. For families facing the unimaginable, Jessie May brings hospice care into the home - so children and families are supported where they feel safe and comfortable.

“Our specialist nurses provide support and emotional scaffolding, helping children with life-limiting conditions simply be children.

“Jessie May is a community no one wishes to need, but thanks to us, seriously ill children can be children, watching TV, playing with their toys, and sleeping in their own beds. And their families can make memories to look back on when they need them most. “

To support the hospice visit it’s website here.