People in the last 12 months of their life occupy “almost a fifth of Welsh hospital beds”, according to a end of life care charity.
Marie Curie Cymru says end of life care in Wales is “at breaking point” and is calling on the next Welsh government to ensure high-quality care.
The charity says that, for many, support could be better provided at home or close to home, as it launched its manifesto for next year’s Senedd election at Cardiff Bay’s Norwegian Church on Tuesday.
Gareth Miles died at home in Llanddarog, Carmarthenshire, in September 2023.
Mr Miles, who had Parkinson’s disease, had spent 10 weeks in hospital before his last week.
His daughters, Branwen, Eiry and Elen, are calling for better care at home for those who have a palliative or end-of-life care condition.
Eiry Miles told Sky News the system was “not adequately funded” and there was a “shortage of carers”.
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“Once [her father] was in hospital, even though he was better after 10 days, he couldn’t be discharged because he lost the care package,” she said.
“He was being supported by carers twice a day because of his Parkinson’s and his arthritis, and without the carers, we would have been unable to care for him ourselves.
“So he spent a long time in hospital, waiting for a care package to be reinstated and, while he was there, his condition deteriorated.”
While calling for “better links” between health and social care, Mrs Miles said the support from Marie Curie was “invaluable”.
“Without their support, my father would have been stuck in hospital and his death would have been very painful for all of us, in quite a distressing environment,” she added.
‘Surrounded by his family’
Remembering her father fondly, she said he was a “great person” with a “very fulfilling life”.
“He saw himself as a very lucky man because, as well as being able to do a job that he loved, he also had family and friends that loved him,” she added.
“So it was just very sad then that he spent the end of his life in those circumstances.
“But luckily, we were able to bring him home and he had what he would call a good death in the end, surrounded by his family.
“My intention through sharing this story…is just to hopefully raise awareness of the issue and hopefully make sure that other people are aware of the support that they have.”
Natasha Davies, senior policy manager for Marie Curie Cymru, told Sky News the palliative and end of life care system in Wales was at “breaking point” and “under immense pressure”.
“The result of that is that too many people are not able to access the care and the support that they need, when they need it, where they need it,” she said.
“I think what those experiences show us is the profound impact that getting this right can have, not just on the person who’s terminally ill, but also on those close to them.”
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Ms Davies acknowledged hospital would be “the right and best place” for some people to receive their care.
“But for others, we know that those hospital admissions, particularly via emergency department, could be reduced or avoided,” she added.
The Welsh government said: “Good palliative and end of life care can make a huge difference to those with life-limiting illness, helping them to die with dignity, and help the grieving process for those left behind.
“We provide more than £16m a year to make sure everyone has access to the best possible end of life care. This includes setting national standards, boosting community services and ensuring people receive the support they need.
“We are working with health boards and local authorities, supported by monthly discharge data, to improve the safe discharge of patients from hospital. This applies equally to people requiring end of life care.”
