King’s College London: 2021 LeDeR report into the avoidable deaths of people with learning disabilities

The report, which builds on previous work by the University of Bristol and produced for NHS England, was led by researchers from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, the University of Central Lancashire, and Kingston University London.

This years report found a number of things:

People with a learning disability continue to have a much shorter life expectancy than the wider general public, with 6 out 10 dying before age 65, compared to 1 out of 10 for people from the general population. Those with epilepsy and from minority ethnic backgrounds were more likely to die younger.
The most common cause of death based on death certificates during 2021 was COVID-19. The estimated excess deaths during 2021 compared to pre-pandemic years was double that of the general population. Being vaccinated reduced the likelihood of dying of COVID-19.
Approximately half of all deaths of people with a learning disability was deemed to be avoidable, compared to less than a quarter for people from the general population.
“People with a learning disability have a significantly lower life expectancy than the general public. If this is to change, it’s vital that we review these deaths so that we can learn from them, and to ensure that best practice is followed wherever possible. Although we found fewer problems in care compared to previous years, there are areas where things can be improved, with 8% of avoidable deaths being linked to cancer, 14% to hypertension, and 17% to diabetes as well as to respiratory conditions ”
– Professor Andre Strydom, the report’s Chief Investigator and a Professor in Intellectual Disabilities at King’s IoPPN
Adam White, a Research Coordinator from King’s IoPPN said, “The report is an important step in highlighting how, overall, people with a learning disability have a significantly lower life expectancy than the general public and that continued targeted investment and improvements to care, in particular the causes of avoidable death, DNACPR adherence and differences in peoples backgrounds, could have an important impact on peoples lives and wellbeing”

Prof Irene Tuffrey-Wijne, Professor of Intellectual Disability & Palliative Care atKingston University & St George’s University of London said “Everyone should be helped to understand the important findings of the LeDeR programme. A new group of people with a learning disability (the STAYING ALIVE AND WELL group, based at Kingston & St George’s University) has worked hard on getting their heads around the annual report, and then produce an accessible video and easy-read report. We hope that this new format helps other people with a learning disability to understand it, too.”

Professor Umesh Chauhan, a clinical academic based at University of Central Lancashire said, “Our findings suggests that learning disability liaison nurses improve the care provided to people with a learning disability and are proving to be a valuable asset to the organisations which host them. In addition, the covid-19 vaccine roll-out has potentially had an important impact in saving lives of people with learning disability and we must learn how we can ensure this continues to do so.”

“This, the first LeDeR 2021 report produced by King’s IoPPN, highlights the health inequalities that persist for people with a learning disability, including in avoidable deaths. Having this evidence allows the health service at all levels to continue to focus on improving care for people with a learning disability and direct efforts for maximum effect.”
– Dr Rory Sheehan, a senior clinical lecturer in forensic neurodevelopmental psychiatry at King’s IoPPN
Dr Rory Sheehan, a senior clinical lecturer in forensic neurodevelopmental psychiatry at King’s IoPPN said, “The new LeDeR strategic partnership brings together stakeholders to provide deeper insights into LeDeR review findings and translate evidence from the report to real-life improvements that will be measured over coming years”

Joanthan Ding, a research assistant and co-ordinator for the Staying Alive and Well co-production group said, “This year we hoped to use an innovative approach to co-production so that report’s findings were accessible to a wider range of people. Our accessible video provides the key findings from the report in a digestible format.”

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