‘Postcode lottery’ of care for dying children – charity
Together for Short Lives said round-the-clock care at home varies depending where families live.
A bereaved mother has implored the Prime Minister to act after she had to battle to get round-the-clock care at home for her son in his final days.
Clare Buchanan’s son Oliver, 11, died from a brain tumour in 2023.
She said she knew Oliver needed to be at home “for as long as possible” but was told that that it would be “very difficult” to put a care package in place for this to happen.
Ms Buchanan has written to Sir Keir Starmer, saying that many families feel “abandoned and overwhelmed”.
It comes as a leading children’s palliative care charity warned that families of dying children face a “postcode lottery” of care.
Together for Short Lives said access to 24/7 end-of-life care at home is “far too inconsistent” from region to region.
A new report by the charity states that as a result, families have to “endure unnecessary hospital admissions, delayed discharges and a lack of choice and control”.
Under a fifth (19%) of local health bodies specifically “formally” plan and fund 24/7 at-home end-of-life care for children, the charity said.
It said this means that families living in some parts of the country who are caring for a seriously ill child stand a “much better chance” than families in other areas to enable their child to die at home, if that is what they want.
Ms Buchanan, from Greater Manchester, said: “All we wanted for Oliver was for him to be at home for as long as possible, where we shared so many special memories.
“I wanted Oliver to be able to look out over the fields and hills and see the sun rise and set.”
“So I made a nuisance of myself. I called and pushed and ended up speaking to a friend with a good job at our local NHS Trust to try and get things moving.
“Ultimately it was because of that and the goodwill of nurses who wanted to help despite the barriers they faced.”
Friends and family took shifts to be with Oliver through the night, and nurses worked extra hours to cover the care he needed.
Ms Buchanan added: “It was where we wanted him to die, surrounded by the love of his family, the green fields, the sound of nature and just peace. But to get to that point cost a lot.
“I honestly thought that when your child is dying, you would have 24/7 care at home. But it turns out that just isn’t the case.
“Most of the time it was done by myself and my family, and a patchwork of goodwill from various nursing care providers. But we never knew if we’d have cover from one week to the next, there was no security.
“In the end, Oliver died peacefully and without pain. It was a good experience if you can describe it as that and I am very aware of how this time can unravel for families, especially without the right support. We count ourselves lucky.”
Ms Buchanan has written an open letter to Sir Keir urging him to review how palliative care for children is funded.
“Families like mine aren’t getting the care they need and aren’t able to make choices about their child’s end of life, because of where they live,” she wrote.
“So many feel abandoned and overwhelmed by a system that is failing them.”
Together for Short Lives says funding shortfalls, workforce shortages and a lack of leadership and accountability are contributing to the postcode lottery of care across the UK.
It has estimated that the funding gap is one of the main barriers which has created these inconsistencies in children’s end-of-life care.
In England alone, the charity estimates there is a £310-million funding gap for the NHS to deliver children’s end-of-life care.
Many families have told the charity that they felt abandoned and overwhelmed after their child was diagnosed.
Nick Carroll, chief executive of Together for Short Lives, said: “For too long, seriously ill children and their families across England have been failed by a system which has been persistently underfunded and under prioritised. It says a lot that Clare had to fight to have the end-of-life experience she wanted for her son Oliver.
“The UK Government must act urgently by holding a full review into the way children’s palliative care is planned and funded in England.
“We know that public finances are under pressure, yet the money needed to fix the issues across children’s palliative care is tiny when compared to the annual NHS England budget.
“What we need is the will of those in power to act – so that mums like Clare can spend less time fighting to get the care their child needs and more time making the most of the short time they have together.
“If ministers are to achieve their aims of shifting care from hospitals into the community in the next decade, we urgently need a children’s palliative care system that’s built to last.”
A Department of Health and Social Care spokesperson said: “Our sympathies are with all families requiring end-of-life care for a child.
“We recently announced the biggest investment in hospices in a generation: £100 million to improve facilities and allow them to focus wider resources on patient care. Hospices for children and young people will also receive a further £26 million.
“We are working to make sure the sector is sustainable in the long term, and this government is determined to shift more healthcare out of hospitals and into the community through our Plan for Change.”
