Hospice care gave my mum a dignified death - now others might not have that chance
For ITV Tonight, Investigations Editor Daniel Hewitt meets those at the heart of a funding crisis that has hit hospices across the country
My mum Diane was 51 when she was diagnosed with breast cancer.
She endured countless rounds of gruelling chemotherapy, and for five years managed to live a largely full and active life alongside her treatment, free of debilitating pain.
At the beginning of 2014 her condition deteriorated quickly. The final few days of my mum’s life were beyond tough. Her bravery knew no bounds, but bravery is not enough in the face of cancer.
She was dying, and for a short period of time she was dying in pain.
That is when we were referred to our local hospice. Hospices cannot save you, but they save you from the worst of what dying can bring.
They saved my mum from dying in pain, and they saved her from dying in a hospital.
There are not enough words in the world to describe the unending gratitude we have for the palliative care nurse who came to our house from St Giles Hospice in Staffordshire, and made my mum comfortable.
It meant she could stay in her own home, in her own bed, surrounded by family.
Until that time, I had no idea what hospices really did. To me, I ignorantly thought they were nice places where old people went to die.
I soon discovered that ignorance is widely shared, as is the understanding, or lack of, of how hospices are actually funded.
The work of hospices is both precious and precarious. The vast majority of end-of-life care that they deliver is paid for through donations.
My mum died with dignity, at home, because someone somewhere held a coffee morning, or donated some old clothes to their local charity shop, or ran a marathon.
The government provides, on average, just a third of hospice funding. Children’s hospices receive even less.
It costs around £1.6 billion a year to run the UK’s 200 or so hospices. £1.1 billion of that is raised by the hospices themselves through fundraising.
That is hard enough in good times, but in both economic and health terms, these are not good times. To put it bluntly, slowly but surely hospices are running out of money.
An ageing population living longer with terminal health conditions means hospices are treating more people than ever, at a time when the cost of living is limiting the amount of money coming through the door in donations.
Data given exclusively to the Tonight programme by Hospice UK reveals 70% of hospices are in financial deficit this year.
“We estimate that the hospice sector as a whole could be facing spending a hundred million pounds more than it gets in income,” Toby Porter, Chief Executive of Hopsice UK, told us.
“That is not a sustainable. The sector will just simply start to shrivel.”
The financial pressures keep coming. When the government announces pay rises for NHS staff, as it did recently, most hospices agree to meet the increase in order to retain nurses and doctors, but they don’t get any government funding to pay for it.
The money has to come from through more fundraising.
On top of that, the recent national insurance increase in the Budget will also hit hospices, who are not exempt.
We understand discussions are taking place between the sector and government ministers.
I have been told the sector has asked the Department of Health for an immediate cash injection of £110m to avoid cuts to services and jobs before Christmas.
For our special Tonight programme, I went been back to St Giles Hospice in Staffordshire. It is more than a decade since they helped my mum, but things have changed.
Just 18% of St Giles' funding comes from the government.
It means they need to raise more than £8 million from the local community every year just to stay open, but not enough money is coming in.
The hospice has had to cut 22 jobs this month, and reduce the services it provides. Standing in an empty inpatient room, St Giles CEO Elinor Eustace tells me it is “madness”.
“We've got 23 beds here on our inpatient unit,” she said. “We can only afford to run 15, so a room like this is going to be empty because we are not able to staff this inpatient unit.
“It is heartbreaking and it's absolute madness. If we have 23 beds, we can relieve more pressure from an already struggling (NHS) system but we literally can't afford to do it.”
Hospices are charitable organisations but they play a crucial role in the healthcare system, taking patients out of NHS hospitals and away from NHS services.
Natalie Morris has already noticed a difference in the care hospices are providing.
In 2019, her dad Tony was diagnosed with kidney cancer. He was a TV presenter at the time, a legend of regional news at ITV Granada Reports in the northwest of England.
As his condition deteriorated, he received end-of-life care at Bury Hospice in Lancashire, and Natalie was blown away by the treatment.
“I was shocked. I couldn't believe that these places existed,” she told me.
“My dad had this huge room all to himself, windows that looked out onto this beautiful garden. It felt like we were in our own little bubble. We could be together.
“I just think (the staff) are like angels on earth, which sounds so over the top, but that's genuinely how it felt in that moment because I'd never experienced such compassion, such care.”
Tony died peacefully at the hospice in August 2020. Three years later, Natalie learned her mum Kim was seriously unwell.
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“Mum was a force of nature," she said.
"She was the glue that held my life together. She was the witness to my life, the witness to the most mundane things. She was our cheerleader.
“It just caught us completely out of the blue. She'd been unwell, and the doctors weren't sure what it was.
“A part of my brain was like, surely not, surely this can't happen again so soon to our family? It's not our turn again, surely?”
Diagnosed with pancreatic cancer, Kim knew that she was dying. After seeing what Tony had been through, she began to plan her own hospice care, albeit at a different one near where she lived.
Natalie said: “She was really proactive. She went to visit hospices, she made a plan with her GP, and she was very clear that was the path she wanted to go down.
“When it got to that point where she could no longer be at home…she didn't want to be at hospital. She wanted to be in a hospice.”
Despite becoming seriously ill only four years apart, the contrast in care Tony and Kim received could not have been more different.
Natalie watched as the careful requests her mum had made for a dignified death failed to materialise. She says Kim’s hospice stay was no different to being in an over-run, under-resourced hospital.
“The staff were trying their hardest, it felt like the resources had been pretty brutally stripped," she said.
“For her to be in such a vulnerable state, to be on a shared ward with other people, all we could do was pull a thin curtain around her bed.
“We didn't get that privacy that we were hoping for, we didn’t get that space.
“It was heartbreaking to see her in a position where she'd been so meticulous, so careful, so proactive, so brave, to then not have the experience that she'd so carefully planned for and hoped for.
“This is a crucial time. You don't get a second chance at this. When someone is in the last days of their life, you don't get a do over.”
Kim passed away in September.
Another problem with relying so heavily on your local community for donations is the glaring wealth inequality between different parts of the country, with some areas able to offer more than others.
Some regions also receive more help from the government than others, and other areas have no hospice service at all.
Kate, who has terminal breast cancer, told ITV News' Daniel Hewitt she has put her house on the market to move somewhere close to a hospice
On top of the huge financial pressures, hospices could be about to grapple with an enormous challenge.
A new bill on assisted dying is set to be debated in Parliament on Friday, a controversial new law which would allow people with a terminal illness to end their own life.
Some in the sector believe palliative care needs to be improved first, before such a momentous decision is made.
“We carried out a survey in September of this year,” said Professor Katherine Sleeman, an expert in palliative medicine at Kings College London.
“We found that 83% of people who support assisted dying legalisation cite poor palliative care as a reason for their support.
“It does really concern me that legalising assisted dying in the context of patchy and often inadequate palliative and end of life care services will lead people to choosing it simply because they can't get the care they need.
“That, to me, is very concerning and needs to be thought about very, very deeply.”
There are of course many other reasons why some people support assisted dying, but the consequences for an already struggling hospice sector is currently unclear.
Fundraising, the goodwill and generosity of strangers, can only go so far in funding palliative care. Hospice are begging for sustainable funding from the government to complement the enormous amount of fundraising they undertake to continue their incredible work.
Our experience with the hospice was short. Some people rely on them for many years, their conditions incurable but manageable, and their lives are lived better as a result.
Hospices do so much - respite care, physiotherapy, rehabilitation, pain and symptom control, physiological support, financial advice.
For the vast majority of people who come into contact with a hospice, they are not places where people go to die, for many they are places where people to go live.
The government declined an interview for the Tonight programme. In a statement they told us they are determined to make sure everyone has access to high quality end-of-life care and thank the public for their generous donations.
Hospices, they said, have a big role to play in the shift towards moving more healthcare into the community. You can watch the full Tonight programme, ‘Keeping Care Alive: Hospices in Crisis?’, on ITV and ITVX at 8.30pm on Thursday, November 28.
If you’re living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help.
Visit mariecurie.org.uk, email support@mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309.For more information and support pages to provide guidance and tips to help you and your family through end of life care, visit Hospice UK's website.If you need help for a mental health crisis or emergency, you should get immediate expert advice and assessment. NHS guidance on what support services are available for you to access are laid out here.If you have questions or just need someone to talk to regarding the care of a child that is receiving palliative care, visit Together for Short Lives: Children's Charities - Children Hospices or contact their confidential helpline for listening support on 0808 8088 100.
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