‘We assumed she’d have palliative care’: Daughter speaks out as end of life support is in crisis
Thousands of people across England - including families in the South West - are dying without the support they need at the end of their lives, according to a major new study commissioned by Marie Curie.
The research estimates that around 170,000 people a year – almost one in three – die with pain, distress or unmet needs that could have been addressed with proper palliative care.
Among those affected is Helen Thomsit, who has been speaking about her mum Jo’s final weeks after she was diagnosed with cancer.
‘At no point did anyone tell us’
Helen said the family assumed that once her mum’s diagnosis was confirmed, there would be treatment to ease symptoms and clear guidance about what to expect.
“Obviously, initially, once we were told that she had cancer, we assumed that she would be given some treatment to, I don’t know, relieve some symptoms, prolong her life,” she said.
“We knew she didn’t have long, but we didn’t know how long. And at no point did anyone tell us.”
As Jo’s condition worsened, Helen believed palliative care would be arranged.
“I again assumed that she would have some form of palliative care. We wanted to get her home. She wanted to be at home. She wanted to be able to see her garden and her cats again. And that’s where she wanted to be at the end.”
But Helen said by the time the family were told her mum was too ill to be moved, it was too late.
“By the time they came to tell us that she was too ill, it was too late to get her anywhere.”
She also believed a hospice transfer might be offered.
“I think I thought that she would be transferred to a local hospice. There are some really, really good ones… but that was never offered as an option. And I wish that I’d been strong enough, we’d been strong enough to fight that.”
A growing national problem
The study, led by researchers at King’s College London and the University of Hull, found that 34% of people with multiple health conditions experience unmet palliative care needs. Those in financial difficulty are also disproportionately affected.
With an ageing population and more people living longer with complex, life-limiting conditions, unmet need is projected to rise by 23% over the next 25 years.
Marie Curie says out-of-hours support is a particular concern. Despite nights and weekends making up most of the week, only seven of 42 Integrated Care Boards in England have a dedicated 24/7 single point of access for palliative and end of life care advice.
Campaigners are now urging the Government to guarantee round-the-clock support, improve access to essential medicines and ensure all healthcare staff receive mandatory end of life care training.
For Helen, the issue is simple: no family should have to navigate uncertainty and silence at such a devastating time.
Marie Curie is calling on the public to back its Fix End of Life Care campaign to help ensure everyone has access to compassionate, coordinated care at the end of life.