Almost one in three adults in Wales do not have the palliative care they need

Jules Millward

Palliative care in Wales is broken, says a leading end of life charity, as almost one in three adults in Wales have unmet palliative care needs, meaning they are left without enough support at the end of life.

New figures published by Marie Curie suggest that there are more than 10,000 adults across Wales whose symptoms aren’t addressed and who do not have enough support from their GP.

Currently, 1 in 14 of every emergency department attendance in Wales is in relation to someone who is in their last year of life – with too many cases of unnecessary admissions.

Additionally, almost a fifth of hospital beds in Wales are occupied by people in their last 12 months of life.
According to Marie Curie, these figures are further evidence that the Welsh palliative and end of life care system is at breaking point.

Demand for palliative care is also increasing. Marie Curie estimates that by the 2040s, 37,000 people in Wales will likely need palliative and end of life care each year, an increase of 5,000.

Based on this latest analysis, it is estimated that without additional intervention around 1500 more people are likely to face unmet palliative care needs in 2050, compared to 2025, an increase of 14%.

Horrendous

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.

Mr Midlane, who now lives in Bridgend, 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 at that point Pete took a leave of absence from his job, prior to receiving support from Marie Curie.

He added: “The tiredness just took over,” he said. “That and the isolation. It put strain on my marriage. I lost quite a lot of weight. I was stressed and cranky. I barely left the house for weeks! My mum would get quite distressed if I left her alone even for a short spell, just to run to the shops.

“When we first had contact 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.

“Marie Curie would also check in with me to see how I was doing and if I said that I was struggling, they would arrange for someone to come be with Mum through the night. If Marie Curie hadn’t been there, it would have been horrendous.”

System wide approach

Marie Curie Cymru has set out a comprehensive programme of policy change in its manifesto ‘At breaking point: Time to transform end of life care in Wales’.

It provides a roadmap for the incoming Welsh Government in May to ensure that services are responsive to people’s needs, that palliative care is sustainably funded, and to strengthen out of hours and community care so people have 24/7 access to care and support at or close to home.

Marie Curie Cymru Senior Policy Manager, Natasha Davies, said:“It’s simply unacceptable that so many people are being left without the care and support they need at the end of life.

“Too many people are spending their days isolated, in pain and struggling to make ends meet. Carers are being left abandoned without support, and services and staff are struggling to deliver the care people need, where and then they need it.

“Change is urgently needed.

“Transforming end of life care means making sure that everyone can access the care they need in the right place, at the right time. It means taking a system wide approach that fully integrates palliative and end of life care into health and social care, and ensuring people have access to advice, support and care 24/7.

“Placing palliative care nurses in each primary care cluster, integrating palliative care paramedics into specialist palliative care teams and providing a 24/7 single point of access for advice and information via 111, staffed by clinically trained palliative care staff, would significantly improve access to services and care coordination.

“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.

“People can add their voices to our calls for change by signing our open letter, which will be sent to the First Minister after May’s election, and makes clear the need to turn warm words into action.”

The Welsh Government commented: “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 offering a suite of advance and future care planning resources for the public and for health and social care professionals.

“Work on a new hospice commissioning approach is ongoing to ensure fair access, long-term sustainability, and high-quality care across Wales.”

Read Marie Curie’s open letter here.