End of life care in Wales 'at breaking point'
End of life care in Wales is at breaking point says a leading end of life charity – with almost a fifth of hospital beds1 occupied by people in their last 12 months of life.
Marie Curie Cymru is calling on the next Welsh Government to ensure everyone has access to high-quality care in the right place at the right time.
The leading end of life charity launched its Manifesto for next year's Senedd election today at Cardiff Bay's Norwegian Church, where attendees heard from Peter and Eiry - both of whose parents experienced extended periods of time as hospital inpatients in their final months.
Marie Curie – which provides expert end of life care for people with any illness they are likely to die from - estimates a cost of £1.3 million per day2 to the NHS in Wales in beds for people in their last 12 months of life.
While for some, hospital will be the right place to access the care they need, for many others, support could be better provided at home or close to home.
Peter Midlane's mum Joyce, spent six months in various different hospitals across Carmarthenshire before she was able to go home to be cared for before her death at the age of 97.
Pete, of Pontyates,said: "When social services eventually put a care package together, it was horrendous.
"I was expecting a middle-aged male nurse, but instead it was 18 to 20-year-old students with no driving licence, relying on public transport to get to us, living in the middle of nowhere. So, they were always hours late. It was just impossible. And it wouldn't have been so bad if they were care students, but they were engineering students...they had no idea how to look after elderly people. They had zero experience."
It was at that point Pete took a leave of absence from his job, and then he and mum received support from Marie Curie.
"It's difficult to describe the relief. It's mixed emotions as you know it means end of life care and that the end is coming. But the relief that there's somebody there that you can talk to is wonderful. They looked after my mum and me. When you find out what these nurses are capable of...it is absolutely vital. Marie Curie nurses are very special people."
Gareth Miles died at home in Llanddarog, surrounded by his family, in September 2023. Prior to his last week, he had spent 10 weeks in hospital. He had Parkinsons.
His daughters Branwen, Eiry and Elen are backing Marie Curie's calls for better care at home for people with a palliative or end of life care condition.
Talking of his hospital stay, Elen said: "I think it just reflected unfortunately the lack of link between NHS and social care. Unfortunately, he couldn't leave hospital at an earlier date after that initial series of illness to go into a more comfortable home or medical environment more suited to him. The environment was very bright and noisy, the staff were lovely, but it wasn't the right environment for him for weeks on end."
He was able to come home thanks to Marie Curie support.
Eiry said: "When he laid on the bed at home, he just said, "Oh, dyma braf" – this is nice in Welsh - because it was just quiet and peaceful, there was birdsong outside and people he knew around him. When the Marie Curie staff came overnight, having someone there sitting with them meant that we could have a break and sleep because we hadn't been sleeping."
Branwen added that the Marie Curie Nurses allowed them to relax, and cared for the whole family, as well as dad.
Marie Curie Senior Policy Manager, Natasha Davies, said: "End of life care in Wales is at breaking point. Gaps in care and a system under severe pressure mean too many people are spending their final days isolated, in pain, and struggling to make ends meet. Carers are being left abandoned without support. Services and staff are struggling to deliver the care people need, when and where they need it. There is an urgent need for change.
"Truly transforming end of life care means making sure people can access the care they need, in the right place at the right time. It means getting the basics right to tackle inequity; by understanding gaps in care so services deliver timely, personal, and high-quality care for everyone in Wales, no matter who they are or where they live.
"It also means having meaningful conversations with dying people about their care preferences, so their wishes are heard and respected. And it means protecting people living with a terminal illness from poverty, and making sure carers and loved ones receive proper support.
"We cannot afford to waste time getting this right. The next Welsh Government must show strong leadership and commit to the bold, radical actions that are needed to truly transform end of life care."