Public and patient involvement

People die at all times of the day and night, seven days a week. So why are end of life care services so difficult to access at home outside of Monday to Friday, 9am to 5pm?

New research funded by Marie Curie has found that terminally ill people are struggling to access essential care at home during evenings and weekends, which the charity warns, means people are dying in pain.

The research and policy recommendations, published in the Better End of Life Report 2022, has been undertaken by Hull York Medical School, King’s College London’s Cicely Saunders Institute, and the University of Cambridge.

We worked collaboratively with a group of public and patient involvement and engagement partners throughout the Better End of Life Programme, to shape and inform the research.

However, for this report, we – together with public and patient involvement (PPI) partners – decided to do some additional work.

In May 2022, a PPI workshop was held with an independent facilitator, to consider all of the research findings which inform the report, to share how these did (or did not) reflect the experiences of PPI participants in the workshop, to consider what insights their experiences added to our understanding of out-of-hours care, how this related to the research findings, and how to incorporate these perspectives into the report.

As a result of this work, the report contains a section called ‘The people’s perspectives’, written by PPI partners themselves, and based on the workshop outputs. This section describes some of their lived experiences of out-of-hours care. It resonates strongly with – and reflects on – the collated research findings and provides clear recommendations which add considerably to the report.