s Hospice in London was a lifeline for Angie Taylor, whose father John was referred there for specialist care. He had terminal stomach cancer, like Terry, but was fortunate to receive high-quality support from the hospice team.
Angie describes the hospice as “a peaceful haven” where her father could die with dignity.
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But too often, hospices like St Christopher’s are overstretched and have to turn people away.
Dr Jane Collins, chief executive of Marie Curie until 2018, says it is often because they are underfunded. “Hospices tend to be seen as an add-on rather than a core part of the system, which means their sustainability is a problem. So when they get pressurised they end up closing because they can’t take any more patients. But that’s not just a travesty for the people who don’t get in, it also leads to people ending up in hospitals who wouldn’t otherwise have been there.”
Marie Curie research found more than 15,000 terminally ill patients a year are turned away from hospices, leaving their families to care for them as best they can alone. This was the case for Stephen Horan, who lost his daughter, Louise, in 2021 to motor neurone disease.
Sue Horan
After being turned down by two hospices, Stephen had to give up his job to care for Louise at home, with support from other family members. They relied on district nurses for pain relief and other medication, which served as a reminder of the lack of proper support for Louise in her final days.
Dr Rajiv Choudhrie, a consultant in palliative medicine in Leicestershire, describes the rising need for palliative care as a “ticking time bomb” and says the sector is not prepared.
He points to the lack of palliative care training for general medical staff and nurses, too few specialist doctors and nurses, and a lack of cohesion between palliative care, community and GP services.
Jill is a nurse who works in a hospital providing palliative care. She says staff do their best but often lack the confidence to have difficult conversations with patients and families about the end of life.
“I see a lot of suffering and poor symptom control in those who might not have died in hospital if only they had had better support earlier. We need a strategy to manage this growing public health need,” she says.
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Dr Choudhrie is concerned that without significant investment and reform, the UK risks becoming a country where people facing the end of their lives continue to slip through the cracks.
But despite the challenges faced by the palliative care sector, families affected by the death of a loved one are hopeful that change is possible.
Angie Taylor, whose father received excellent care at St Christopher’s Hospice, says: “Without hospices and the service they provide, I would have had to care for my dad on my own. I could not have done it. I am so grateful.”
Similarly, Gillian Holtom, who watched Terry Leader suffer alone in his final days, says: “I want to see changes so others do not have to go through what we did. It should not be like this for anyone.”
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