The findings of a study into end of life care in the region have revealed a mixed picture, with over half of people who completed the survey rating their experience as ‘Very good’ or ‘Good’ and more than one fifth rating it as ‘Poor’ or ‘Very poor’.
NHS East of England commissioned Marie Curie to carry out the study, Experiences of Palliative and End of Life Care in the East of England, which was conducted across all six integrated care systems in the region and represents the views of some 625 patients, carers and those recently bereaved.
This included adults who were currently living with a terminal illness, those supporting or caring for someone living with a terminal illness and bereaved family or friends of someone who had died from a terminal illness in the last two years.
Ambitions framework
In 2021, the NHS set out its vision to improve end of life care by 2026. The Ambitions for Palliative and End of Life Care framework outlines the need for collaborative action between organisations at a local level throughout England.
The purpose of the Marie Curie study was to understand the extent to which the ambitions are currently being met, to identify what is working well and the areas where improvement is needed. It was carried out between 5th July and 7th October 2024 and featured an online survey as well as structured in-person group discussions.
A mixed picture
Nearly a tenth (9%) of responses were from patients themselves, just over a third (34%) from carers and just over half (57%) from recently bereaved family and friends. 55% of people who completed the survey rated their experience as being ‘Very good’ or ‘Good’, 22% rated their care as Poor’ or ‘Very poor’, while 21% rated it as only ‘Fair’.
A further 86% said they had experienced challenges with their care and 49% said they had experienced delays in care, treatment or transfer between services.
Marie Curie concluded that: “Findings presented a mixed and inconsistent picture, with some respondents likening experiences of care to ‘a roll of the dice’, ‘a game of snakes and ladders’ and ‘a postcode lottery’.
While there were uplifting accounts of positive care, many stories were deeply challenging and highlighted areas where the provision of end of life care in the East of England was falling short of the Ambitions.”
Read the full report here.
