Palliative care leaders have urged the Government to fund the transformation of end-of-life services in the Budget, with Marie Curie, Sue Ryder and Hospice UK among organisations calling for a £200million per year fund to ensure more families receive high quality care and support.
The call comes after Prime Minister Andy Burnham said palliative care needed to be fixed before a debate about legalising assisted dying could take place. Many MPs and parliamentarians cited the dire state of underfunded end-of-life services as a reason for voting against the Terminally Ill Adults (End of Life) Bill.
Urgent priority for Government
Dr Sam Royston, Marie Curie’s director of policy and research, said: “Now is the absolute critical time for all of those words that have been shared about the state of palliative care to turn into action. The Prime Minister himself said that palliative care is not in a good enough state, it needs fixing.”
“This has to be an urgent priority for the Government. We need it to be taken seriously. The Budget provides a great opportunity for them to do something about it.”
Research by Marie Curie has found almost one in three people die without end-of-life care, a figure expected to rise by 24% by 2050 due to a rapidly ageing population.
Patchwork of care
Dr Royston described the current provision of palliative care across the country as “a complete patchwork”, with “bits and pieces of care being provided in different ways in different places”.
A lack of support in the community too often leads to patients ending up in hospital for days, weeks or months, when they would rather be at home. Some 56% of all healthcare expenditure on people in their final year of life goes towards emergency hospital care, while only 11% is spent on primary and community care.
The Government has already set an ambition to reduce unplanned hospital bed days by 10% over the coming three years. Ministers are expected to publish a full Modern Service Framework (MSF) for Palliative and End-of-Life Care in England this autumn, which will set out planned reforms and targets.
Funding needed to deliver plans
Dr Royston said such ambitions would only be realistic if the plan is backed by sufficient funding to allow local health chiefs to commission the services their area needs.
He added: “Part of the purpose of this transformation fund is that it should be up to individual health commissioners to make the call on what works for their local area. There are so many examples of good practice to choose from across so many different settings.”
“If what we end up with is just another plan that's going to sit on a shelf and nobody will be able to act on it because there's no money to actually deliver it, then it would be simply outrageous. Setting that up with the money to deliver it in the Budget would be a really big step forward.”
Marie Curie’s call for a £200million per year “transformation fund” has also been backed by several medical royal colleges, including the Royal College of Emergency Medicine, Royal College of General Practitioners and Royal College of Nursing. Other backers include Age UK and the British Geriatrics Society.
James Sanderson, chief executive at palliative care and bereavement charity Sue Ryder, said the plan “could be a once in a generation chance to make sure all dying people receive the right care”.
He added: “When someone with terminal illness is in pain and without support in the middle of the night, it is the loneliest and scariest place to be.”
“When someone is dying in a busy hospital corridor and their loved ones don’t have the privacy to say goodbye, they feel helpless, fearful and even guilty.”
“This isn’t the end of life that we would want for the people we love, but it is the reality for far too many people. Before the year is out, we need to see its plan, and in the Budget, we need to see the financial commitment to make that plan a reality. Otherwise, the people we love will continue to suffer needlessly.”
Hospice funding crisis
Hospice UK also backed the call for investment and is separately calling for an immediate £112.5million investment to help the ailing hospice sector. This amount would be the first quarter of £450m the charity believes is needed to fully fund specialist palliative care provided by hospices.
Charlie King, director of external affairs at Hospice UK, said: “Too many hospices are being pushed to breaking point, with vital services being cut and seriously ill patients and their families at risk of missing out on the care they desperately need.”
Government funding covers on average only 40% of the care provided by adult hospices and a third of the cost for children’s hospices, according to the charity. There is also wide variation – some hospices receive as little as 3% of their funding from the state, while others receive as much as 80%.
Three quarters of hospices in England were already running at a deficit in February and almost six in 10 had either made or were considering cuts to frontline services, research suggests.
Mr King added: “Hospices rely heavily on the generosity of local communities to keep essential services running, but charitable fundraising alone cannot sustain the care that patients and families depend on. We urgently need a fairer, more sustainable funding system.”
“The Chancellor must use this Budget to act. We are calling for an immediate £112.5 million a year funding boost, alongside a long-term commitment to fully fund specialist palliative care, fair NHS contracts and support for staff pay.”
“No one should face the end of their life worrying about whether the care they need will be there. The Government must stop leaving hospice care to chance.”
Families' experiences
Zoe Cooney witnessed her mum Karen suffering before she died in hospital, on a ward where nurses “did not have a clue” how to help her. She said: “At the end of her life, Mum was in pain. She was begging for help. She suffered and the nurses did not have a clue.”
“Because it was a bank holiday, everything that was requested, like her pain medication, seemed to be impossible – as if people don’t die on bank holidays.”
Grandmother-of-four Karen had been diagnosed with stage four cervical cancer which had spread around her body. Zoe, 42, of Chesterfield, Derbyshire, remembers her mum waking up distressed, screaming and begging for help, and “thrashing around”.
She had a syringe driver to deliver medication but it did not appear to be working. Karen’s family wanted to move her to a local hospice but were told no one was available due to the bank holiday. They later found out the hospice had never been contacted.
Karen died in April 2025, aged 65. Zoe said: “She basically ended up choking to death on her own secretions. It was just horrible. You wouldn't let an animal suffer like that.”
The nurses caring for Karen also appeared traumatised by the experience, Zoe said, and there were clear gaps in her care and communication between the hospital and hospice.
She added: “There's no excuse for there being nothing in place to support people dying because it’s a bank holiday. She was let down in so many ways and you can't undo that. It's just unreal that this type of thing is happening in a hospital in the UK.”
Helen Daniels’s mum Elizabeth was supported to spend her final days at home with her family before she died aged 78. She had become increasingly frail, contracted pneumonia in hospital and been diagnosed with lung cancer.
Palliative care nurses visited Elizabeth in hospital to discuss her end-of-life options. Helen, 39, of Bedford, said: “Mum never really liked to talk about death or her wishes, but the one thing we knew was that she wanted to be at home.”
Supported by a Sue Ryder team from St John’s Hospice Palliative Care Hub, Elizabeth returned to the home she had lived in since 1982 the following day. Hospital staff and the palliative care workers made the transition smooth and helped Helen sort out her mum’s medications and oxygen supply.
She said: “They just took the difficulty away from me. I’d been to all the appointments with my mum, so I was having to do it all, and they just allowed me to be her daughter.”
Care staff or district nurses visited three to four times a day to keep Elizabeth comfortable and check her medication. Helen and her dad slept near Elizabeth in her final days and were given a phone number to call if they needed help at night. Elizabeth’s last words to her daughter were: “It’s alright.”
Helen added: “The care given to us was amazing and the hospice means so much to us. It allowed my mum to be in the comfort of her own home, with her family around her, as comfortable as she could be.”
