- Video report by ITV News Political Correspondent Daniel Hewitt
An ITV News investigation has found hospices in the U.K. are facing a funding crisis, with increasing demand and rising cost of end of life care not being matched by government funding.
An exclusive survey with Hospice UK found 1 in 3 hospices are being forced to cut services, while more than half (55%) either have, or plan to, delay or cancel the roll out future plans to provide end of life care - 90% of hospices who responded said they did not believe they have the resources to meet the rising demand.
For 89% of hospices who responded, the cost of providing end of life had risen in the past two years, but has not been matched by increased funding from central government. 73% have seen their funding from their local Clinical Commissioning Group (CCG) had been frozen or cut.
The average adults hospice in the UK receives 30% of it's funding from government health budgets, for children's hospices it is 22%.
In Wales and Scotland health spending is devolved - the rest must be raised through fundraising.
According to Hospice UK, hospices support more than 200,000 people with terminal and life-limiting conditions in the UK each year, and that number is rising.
Tracey Bleakley, Chief Executive of Hospice UK, said: “This survey gives a bleak picture of the financial outlook for many charitable hospices.
“Rising service costs and an increasingly precarious 'Jenga-like' funding model are undermining the ability of hospices to provide care at a time when demand for their services is fast growing and care needs are more complex, with more people living for longer, often with multiple conditions.
“Hospices are an important part of a wider care system for terminally ill and dying people and it is vital that there is sufficient investment for the whole system to maintain care provision and also ensure support for more people.
“Failure to tackle this will store up bigger problems and effectively create a care deficit for people with life-limiting conditions in the future.”
At Claire House Children's Hospice in Wirral, their referrals have risen by 84% since 2013.
It costs £4 million pounds a year to run the hospice, and their costs have increased by 10% per cent in the last two years. But without more state funding, they have had to reduce the number of respite days they offer terminally-ill children, and have delayed introducing new services needed to meet the rising demand.
David Pastor, Chief Executive of Claire House, said: "Only 25% of our funding comes from the public sector, which isn't sustainable.
"The demand is going up and up every year, and the money from the public sector simply doesn't follow it.
"That [is] demand we can't keep up with.
“Why should all that pressure fall on people who are fundraising for us?
"If a family can't call us, if they can't come to us in their hour of greatest need, where are they gong to go? Quite often they go straight to A&E, and they have the same conversations again and again about the condition their child has.
"And then they are staying in hospital, when they would be better off in a place where we can help them, we can support them at home or they can come into the hospice if they need to."
Holly Smallman, 17, was born with cerebral palsy, epilepsy, chronic lung disease, and osteoporosis.
She needs round-the-clock medical care and can never be left alone.
In the last 12 months alone, her mum Hayley has been at Claire House with her daughter on four occasions, when doctors believed she was about to die.
"Dealing with the day to day uncertainty of whether you're going to have your child at the end of the week with you, is an enormous thing emotionally to deal with," Hayley told ITV News.
"But then to practically have to take on the day-to-day role of being a full-time carer, nurse, as well as being a parent, is a massive task."
Claire House is the only place other than home where Hayley can leave Holly to be looked after. There, she receives specialist treatment, rest-bite care and it is where Holly will spend the final days of her life when the time comes.
Hayley's fear is growing pressure on Claire House means they will have to scale back the care they provide for her daughter.
"I haven't got Holly for long time, but for the time I have got her, I need to know that her life is as enriched and as happy as I can make it, and that's what our hospice does for us. It enables us to do that," she said.
A Department of Health and Social Care Spokesperson said: “We recognise the important role hospices play in providing excellent end of life care, and we have strengthened our support for hospices as part of the long term plan for the NHS, backed by an extra £33.9 billion in cash terms a year by 2023/24.
"The UK is ranked as one of the best countries in the world for palliative care and we remain dedicated to improving patient choice and ending variation for everyone through our end of life care commitment.
"Local NHS organisations determine the level of NHS-funded hospice care and are responsible for ensuring services meet the needs of their population."