Inside one hospice’s battle for survival as it faces ‘incoming tsunami’ of need

Hospices are receiving “woefully inadequate” funding to deal with an “incoming tsunami” of patients needing end-of-life care, a desperate sector leader has warned.

Chief executive Jeremy Lune is battling to prevent further cuts at Prospect Hospice in Swindon in the face of a £1 million shortfall this year.

On a recent visit to the hospice, the Daily Express witnessed how it has become a thriving community hub, providing a lifeline for patients and families during their darkest days.

It costs around £8.5 million annually to run Prospect – but just a quarter of this comes from the Government via the NHS.

Generous donors, a network of 18 charity shops and a “Save Our Hospice” campaign have kept the doors open, but the centre has been forced to slash its inpatient beds from 12 to six.

READ MORE: Funding cuts will force children’s hospices to axe key family services

Jeremy said: “Hospice funding is woefully inadequate at the moment – that is a fact. In the last 10 years, the amount that we receive from the NHS has not increased in real terms at all.

“The cost of living crisis and so on mean that in real terms, it has decreased. And the need for hospice services is increasing.

“With an ageing population, people are living longer, they’re living with more conditions, and the funding simply doesn’t reflect that.”

Victoria and Donald O’Neill are passionate about preserving services at the hospice after it cared for their daughter Emma before she died in March, aged just 32.

Emma was diagnosed with a golf ball-sized brain tumour in 2015 after suffering a seizure. She endured surgeries, radiotherapy and chemotherapy, but was told in January the cancer was growing again.

She started palliative care in March and when her condition took a turn for the worse, a staff member from Prospect visited the family.

Clinical nurse specialist Tina Baker recognised that Emma’s devastated loved ones were overwhelmed and took charge of all the necessary arrangements, rapidly sourcing crucial medication and equipment.

Stepdad Donald, 59, said: “From the phone call that morning, I will never forget what Tina and [Prospect] did for us. They are ingrained in my heart now. We need places like this.

“I was horrified when I learned a bit more about here and the struggle of finances.”

Emma moved into the hospice two weeks before her death. She was treated with the utmost compassion and dignity and every aspect of her care was personalised.

Victoria, 57, recalled how staff learned the meticulous skincare routine that Emma – an account manager with beauty brand Liz Earle – favoured, ensuring they used the correct products.

One day, Emma asked whether she would ever go outside again. A week later, her bed was moved onto a patio in the hospice’s beautiful gardens and she smiled as she felt fresh air on her skin once more.

Victoria said: “She was living, she wasn’t dying. That sounds so stupid because she was here to die. I’m not sugarcoating it, it was still horrendous. But if I had to lose her, then I’m so thankful that it was here.

“Six beds is not enough. We need the 12 so that other people can have a good death. Death and dying are normal parts of life – we need to talk about it.”

The couple, together for 24 years, still visit the hospice to show their support by having a cup of tea in the volunteer-run cafe.

Rather than being a place of sad memories, it has become a “safe place” where they are surrounded by people who understand their grief, Victoria said.

She added: “You feel that your heart has been ripped out, and you come here and it’s like a balm to soothe. It’s the most horrendous thing to have lost a child. Emma was so vibrant, she was incredible.

“But when we come here, we don’t think: ‘This is where she was taken from us.’ We think: ‘This is where we needed to be for her to be able to go.’”

Tina, 59, has worked at Prospect for six years. She said: “Death is such an important part of life. We only get one chance at getting it right.

“Our aim is to make that a positive experience, for patients’ and their families’ wishes to be met, for people to feel comfortable, safe and supported.”

In between fielding calls from a district nurse, Tina showed us thank you cards from families she has supported, which she keeps on her desk to read on tough days. One read, “Kind people are my kinda people”, while another said, “A million thanks.”

Tina said the hospice was once a busier place, with more services including a day therapy unit where patients living at home came for wellbeing support or classes such as music and art therapy. She added: “At the moment we’re getting loads of referrals every day. That can be quite daunting.”

The hospice’s happy community atmosphere was evident during our visit, the cafe buzzing with staff and visitors at lunchtime. The inpatient wards were much warmer and calmer than those in a hospital, with large rooms where visitors can come and go at all hours.

And the support provided to patients and their families stretched far beyond the hospice itself, including bereavement counselling services, physical therapy to help people remain independent in the community for as long as possible, and hospice-at-home care.

Prospect has seen a rise in younger patients like Emma in recent months, thought to be a result of cancer diagnosis delays during the pandemic.

Jeremy said: “We’re seeing many more people in their 30s and 40s coming in and needing our services. That’s probably going to go on for a while.

“A lot of people think hospices are about elderly people spending the last couple of days quietly drifting away in a bed. That is part of what we do, but every person is treated as an individual.

“You can never take away the grief, the fear, the sadness, the anger around death, but we alleviate it.” For every £1 Prospect receives from the NHS, it delivers £4 worth of care and takes pressure off the local hospitals.

But need is expected to rise by 25% by 2048, Jeremy said, making this funding model “completely unsustainable”.

He added: “We receive more from our charity shops than we do from the NHS. Every time someone brings a pair of jeans into a shop, that’s making a difference.

“And as the need for our services is going up, the cost of putting the lights on, of transport, of food, is going up and up and up.

“We’re having to rely more and more on the people who do the bake sales, the wing-walks and the marathons to support us, and that fundamentally isn’t fair.”

A recent survey by Hospice UK, which represents more than 200 sites, found at least a fifth had either cut services in the last year or were planning to do so.

The sector’s finances are in the worst state they have been for 20 years and some have been forced to make staff redundant at a time when they are needed more than ever, the charity said.

Warning that “no cuts could be off the table” if things do not improve, Jeremy urged Prime Minister Keir Starmer and Health Secretary Wes Streeting to invest in hospices.

He said: “Please, don’t look away from the undeniable need to fund palliative and end-of-life care. We can’t carry on ignoring it. It is an incoming tsunami.

“It doesn’t matter what side of the political spectrum you’re on, you cannot pretend that this isn’t only going to get worse in terms of need. Our supporters, generous though they are, haven’t got bottomless pockets.”

‘The hospice’s support allowed us to focus on creating joy and memories.’

Harry Martin was supported by Prospect’s hospice-at-home team before he died of a brain tumour aged 25. The gym enthusiast was diagnosed after experiencing back pain around the beginning of the pandemic.

An aggressive form of cancer, glioblastoma, had already spread to his spine and progressed quickly, leaving him paralysed from the waist down. Harry’s widow Sinéad Nolan-Martin, 27, said: “It felt like this had all changed overnight.

“We weren’t only dealing with cancer but someone who had previously been very independent and was now entirely dependent. We were completely lost, scrambling to do what we could for him.”

Harry’s GP referred him and hospice staff arranged for physiotherapy, equipment and other support, remaining on call 24/7. Sinéad said the help meant she and Harry’s loved ones could “focus on trying to create joy and special memories”.

She added: “We were living in a nightmare but when they came in, we felt safe and like things were getting back under some sort of control again.

“The gratitude for that will continue forever. It’s due to that support and care that we could try and come to some sort of terms with what was happening, he was able to get to a level of peace with his illness.”

Sinéad and Harry married in March 2021. He died at home 10 weeks later. She is passionate about ensuring others can access similar care and is due to start a job on Prospect’s fundraising team in the coming weeks.

Sinéad said: “I’ve experienced a lot of death now in the family, in the last few years. I’ve seen both death with support from this hospice and I’ve seen it without, in hospitals or at home.

“It really does scare me to think that this service might not be accessible if they don’t get the funding.

“At some stage, we will all experience death – of a loved one or ourselves – and it is so important that we put the effort, funding and time into making that as peaceful and comfortable an experience as it can be.

“This isn’t a place to fear at all. If you speak to patients and families, they feel comfort when they come here, even when they know they might have limited time left.”