Marie Curie has published their ‘Better End of Life Report 2024’ that’s subtitled: ‘Time to Care: findings from a nationally representative survey of experiences at the end of life in England and Wales’. It’s been compiled by King’s College London’s Cicely Saunders Institute, Hull York Medical School at University of Hull, and the University of Cambridge.
Key findings from the survey include:
- 1 in 3 people were severely or overwhelmingly affected by pain in their final week of life.
- 1 in 2 people visited A&E at least once in their final three months of life.
- 1 in 2 people were unhappy with at least one aspect of care the person who died received.
- 1 in 5 people who died had no contact with a GP in the last three months of life.
- 1 in 6 bereaved people met the criteria for ‘disturbed’ or complicated grief.
The report has numerous mentions for dementia, and in the publicity material that accompanied the report launch, Marie Curie say:
Lynda Browne, aged 59 from Solihull, got support from a Marie Curie hospice when her mother died but when she cared for her Auntie Mary, she received no support at home. She said:
“The GP never came for my Auntie Mary. Because she was old and had dementia, she wasn’t a priority. Her catheter bag was often full of blood, but the doctor never came to check, I had to take pictures and then email them to the GP surgery. The doctor would ring me and say, ‘she probably just pulled it’.
I may have thought that was just how things worked when people were at the end but with mum, she got amazing support from the Marie Curie hospice in Solihull. All that pressure was taken off us and we could concentrate on spending time with her instead of having to fight for everything. It is mentally exhausting having to push so hard for care all the time. If like Auntie Mary, a person is elderly but have no family or anyone to advocate for them then they really are at the mercy of their postcode!”
You can find the report, policy summary and policy briefing here: https://www.mariecurie.org.uk/policy/better-end-life-report