Improvements in avoidable deaths among people with learning disabilities, experts say

The 2022 LeDeR report, which seeks to investigate and learn from the avoidable deaths of people with a learning disability in England, has revealed improvements in the median age of death for people with a learning disability.

Research, 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.

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, the researchers found. If children are included, the age at death increased from 60.1 years in 2018 to 62.7 in 2022.

Experts 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 – 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, professor in intellectual disabilities at King’s IoPPN and the report’s chief investigator, 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.

‘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.’

The 2022 report is 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, limiting the conclusions that can be drawn. However, the data highlights 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.

Image: Jeremiah Lawrence

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