Ministers urged to act to protect hospice care for children
Together for Short Lives said hospices are being forced to rely on donations and funds raised from charity shops to prop up services as it called on ministers to increase ring-fenced NHS funding for children's hospices.
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.
A report from the charity, seen by the PA news agency, states inflation, workforce shortages, and rising demand for care are stretching services to 'breaking point'.
The report estimates costs for hospices have risen by 34% since 2021.
However, statutory funding for children's hospices is still 'falling short' of what is needed, it adds.
'With reserves set to dwindle and deficits projected to grow, the future of children's hospice care is becoming increasingly unsustainable,' the authors wrote.
The report also reveals disparities in funding across England, with neighbouring health authorities spending vastly different amounts on care.
Together 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.
One parent described how she 'couldn't live without' the support of her local hospice.
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.
But the future of the hospice remains 'unclear' after its charitable expenditure has risen sharply, and uncertainty around funding has forced it to draw on its reserve and rely on voluntary income, Together for Short Lives said.
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.'
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.'
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