Kingston University makes major contribution to NHS England report investigating avoidable deaths of people with learning disabilities

Academics at Kingston University have played a vital role in the production of an annual report by NHS England examining avoidable deaths of people with learning disabilities.

The Learning Disability Mortality Review (LeDeR) seeks to investigate and learn from the avoidable deaths of people with a learning disability in England, presenting a review of data concerning 3,648 people with a learning disability who died in 2022.

Produced by Kingston and researchers from King's College London and the University of Central Lancashire, the report is part of the NHS England and NHS Improvement funded LeDeR programme to improve healthcare for people with a learning disability and autism, reduce health inequalities and prevent early deaths.

It provides information about the lives and deaths of people with a learning disability as well as those of autistic adults with no learning disability.

This year's report found that 42 per cent of deaths were deemed avoidable for people with a learning disability in 2022, representing a decrease in this metric from the 49 per cent reported in 2021. There was also a small but continuous improvement in the median age of death of people with a learning disability since the first report in 2018, rising from 61.8 years to 62.9 years.

The report's foreword was written by the Staying Alive and Well group, consisting of 10 people with learning disabilities, led by, and including staff members from Kingston University. The group also co-produced accessible versions of the report in video and PDF formats.

Despite the minor improvements, the Staying Alive and Well group said insufficient progress had been made. "We are saying the same things year after year. We might spot a few differences, but it is not enough. Too many people with a learning disability are dying before their time and not getting good care," they said.

Staying Alive and Well group Lead, and Professor of Intellectual Disability and Palliative Care at Kingston University, Professor Irene Tuffrey-Wijne said health inequalities still existed for people with learning disabilities. "It is positive to identify that risks of premature death can decrease with good levels of care and reasonable adjustments. However we cannot sugar-coat the stark truth – people with learning disabilities still die several decades earlier than the general population, and many of these deaths are avoidable," she said.

Professor Andre Strydom, the report's Chief Investigator and a Professor in Intellectual Disabilities at King's College London's Institute of Psychiatry, Psychology and Neuroscience acknowledged that although improvements should be celebrated, it can't be overlooked how much there is still to discover in this area of research. 

Researcher at Kingston University and co-lead of the Staying Alive and Well group Richard Keagan-Bull, who has learning disabilities, said the findings made for uncomfortable reading. "Looking at the numbers in the report was upsetting for lots of reasons. It makes me worry that it could be me next who dies too young. It is heartbreaking that people don't seem to be learning from mistakes. We want to have our voices heard and we want people to understand how we feel," he said. 

• Read the report in full online. Watch a video recording of the foreword on YouTube.
• Contact the Staying Alive and Well group on email.