St Barnabas Hospice comments on the Terminally Ill Adults (End of Life) Bill discussed in Parliament today
As MPs debate the Terminally Ill Adults (End of Life) Bill, we recognise that assisted dying is a deeply sensitive and complex issue, and one that raises important questions about choice, dignity and the care people receive at the end of their lives.
Whatever the outcome of the debate, we believe it is vital that every person facing a terminal illness has access to high-quality palliative and end-of-life care, and that their families are supported.
The current debate has brought to light discussions around funding of palliative and hospice care. Hospices play a vital role in supporting people at some of the most difficult moments of their lives, but the sector continues to face significant financial pressures.
We remain committed to providing outstanding, compassionate care to our patients and their families. We will continue to encourage open and honest conversations about death, dying and what matters to people at the end of life.
For us, this is about making sure that people are supported to make informed choices and that those choices are never shaped by a lack of access to appropriate care, support or funding.
The experience of our patients and families demonstrates just how important hospice care can be. Sarah’s story is one example of the difference that compassionate, specialist end-of-life care can make to a person and those around them.
Sarah’s Story
Mum of five, Sarah was diagnosed with a rare form of cancer at just 38 years old, in March 2024. At first, Sarah was supported by the St Barnabas Hospice at Home team. Rowan, an Advanced Clinical Practitioner with St Barnabas, was there to help manage Sarah’s symptoms, while also providing emotional and practical support to the family.
Rowan said: “Sarah loved her children, and she didn’t want to be miles away from them in hospital. But she didn’t want the burden of care on them. She wanted to stay their mum. At St Barnabas, we look after the person not the patient. For me, that meant spending more time keeping Sarah comfortable at home and helping to take the weight of responsibility off her older kids.”
As the months passed, Sarah’s needs changed. By November, she decided she needed more specialist support and moved into the St Barnabas Inpatient Unit. This meant the family could focus on being together and making the most of their time with her.
Her daughter Lola (18) said: “I had no idea what the Hospice would be like. I imagined it would be quite intimidating, quite terrifying. But as soon as I stepped in, it just felt like a home.”
Sarah’s daughter Beth (23) added: “I came in one day, and somebody was sat behind her chair, drying her hair and plaiting it for her, and it was just amazing to see. We had fish and chips together one day. The food was so good, proper home cooked meals.”
“It was only when our mum came into St Barnabas that I actually felt like I could be her daughter again. As a young family, with a young mum who was in absolute perfect health, you’d never think in a few months’ time you’d be there, relying on people’s donations,” shares daughter, Kaitlyn (22).
“There’s a lot of changes when someone is at the end of their life, and I was scared. But St Barnabas literally did everything for us. It makes me emotional because of how nice the staff were, and I don’t think I could have done it without them.”
Sarah died in the hospice on 6th December, just nine months after her diagnosis. St Barnabas helped the family make precious memories together, during an incredibly difficult time. One of their most special memories was an early Christmas Day.
Kaitlyn shares: “Being able to have a Christmas with the family in the Hospice, that’s something we would have never got anywhere else and we’re so grateful that we did get that last memory. It really made a difference to have that last family get together where we just felt like we were at home.”
The experience of our patients and families demonstrates just how important hospice care can be.
“St Barnabas allowed those last few weeks and something that’s so hard to become a peaceful, nice memory. In a way, they saved our lives and saved our future – I would put it like that,” shared Beth.
Sarah’s story is a powerful reminder of the difference that hospice care can make, not only to someone living with a terminal illness, but to the people who love and care for them.
As this Bill progresses, we believe the voice and expertise of the hospice and palliative care sector must remain central to the conversation. Whatever decisions are ultimately made by Parliament, there must be a long-term commitment to ensuring that hospice and palliative care services are properly supported and sustainably funded.
We also need the support of our local community to continue providing this care. At St Barnabas, we must raise £7 million through fundraising and retail activities every year.
