While there are positives, it’s also clear that more work still needs to be done. People from ethnic minority groups died younger, and there is a need to improve access to care pathways to improve prevention and better manage some conditions in people with a learning disability, such as cancer, lung, heart and circulatory conditions. We also identified a concerning effect on excess deaths of people with a learning disability during heatwaves. This means care homes and hospitals looking after people with a learning disability need to be better prepared for weather events in the light of climate change. Improvements during 2022 should certainly be celebrated, but we shouldn’t overlook how much we still don’t know.
Professor Andre Strydom, Chief Investigator and Professor in Intellectual Disabilities at King’s IoPPN
30 November 2023
2022 LeDeR report into the avoidable deaths of people with learning disabilities
The 2022 LeDeR report, which seeks to investigate and learn from the avoidable deaths of people with a learning disability in England, was published today.
The report, which is 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. A copy of the report can be found here.
This year’s report established a number of things. Researchers found that there has been gentle but continuous improvement in the median age of death for people with a learning disability in 2022. In 2018, the median age of death for adults with a learning disability was 61.8 years but has since risen to 62.9 in 2022. If children are included, the age at death increased from 60.1 years in 2018 to 62.7 in 2022.
The team also found a drop in the number of avoidable deaths since 2021 – 42% of deaths were deemed “avoidable” for people with a learning disability in 2022 compared to 50% in 2021.
The report also highlighted a sharp drop in the number of deaths due to Covid-19 – from 24% of all causes of death in 2020 to 19% in 2021 and 6% in 2022 for adults with a learning disability.
Professor Andre Strydom, the report’s Chief Investigator and a Professor in Intellectual Disabilities at King’s IoPPN said, “Our analysis into this year's data suggests that progress has been made in improving the lives of people with a learning disability. It is reassuring to see age at death increasing, while avoidable deaths continue to decrease. More deaths were referred to a coroner, which may help to identify where care can be improved. We also found a clear association between access to appropriate care and reductions in premature death, suggesting that, when the right level of care is provided, the level of risk goes down.
Dr Rory Sheehan, a co-author of the report and Senior Clinical Lecturer said, “The annual LeDeR report reflects the continuation of efforts to reduce health inequalities experienced by people with a learning disability and autistic people. There are some encouraging findings this year, including that assessments of the quality of care that people received before they died have improved, and fewer people had problems in getting the care they needed. The analysis also shows us where care can be improved, such as making sure that reasonable adjustments are provided across care settings.”
The 2022 report is also the first to investigate deaths by autistic adults without a learning disability, due to concerns that autistic people may also experience to health inequalities that could lead to avoidable deaths.
A total of 36 reviews were completed in 2022, which the researchers stress means that only limited conclusions can be made. However, the data does highlight the need for improvements to be made in specific areas, such as better mental health care for autistic people due to deaths as a result of suicide, misadventure or accidental death.
Autism and learning disabilities are not the same, so the inclusion of data of deaths of autistic adults for the first time in a LeDeR report is an important addition. By doing this, LeDeR can start to address concerns that there may be health inequalities that are uniquely experienced by autistic adults that could lead to avoidable deaths. Whilst this data is in its first year and therefore quite limited, it represents an important first step for LeDeR towards better understanding some of the specific support needs that autistic people face, and how better to provide health care services to reduce the number of avoidable deaths.
Adam White, King’s IoPPN
Professor Irene Tuffrey-Wijne, leader of the Staying Alive and Well co-production group that helped with the report and a Professor of Intellectual Disability and Palliative Care at Kingston University said, “It is good to see that risks of premature death can decrease with good levels of care and reasonable adjustments, but we cannot sugar-coat the stark truth that people with learning disabilities still die several decades earlier than the general population, and that many of these deaths are avoidable.”
Richard Keagan-Bull, Researcher with a Learning Disability at Kingston University and co-leader of the Staying Alive and Well group, was speaking for his peers and said, “Looking at the numbers for this report was very upsetting for lots of reasons. It makes us worry because it could be us next.”
Professor Umesh Chauhan, Professor of Primary Care at the University of Central Lancashire said, “The report has again highlighted some important reasonable adjustments which lead to improved care across health and social care and evidence would suggest risk of earlier age at death can be reduced through measures such as improved uptake of vaccination programmes, effective management of conditions such as epilepsy and mental health problems.”
A copy of this year’s report can be found here
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Professor in Intellectual Disabilities
Senior Clinical Lecturer
Research Associate