NHS England Publishes LeDeR Report into the Avoidable Deaths of People with Learning Disabilities

A report which seeks to investigate and learn from the avoidable deaths of people with a learning disability in England has been produced on behalf of NHS England.

The report 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.

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.

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 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 areas that the NHS needs to improve, including in the duty to provide reasonable adjustments to care across different health 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.

Professor Martin Green OBE, Chief Executive of Care England, said: “During the pandemic, the learning disability sector was not given the public or political attention it deserved or required. As we rebuild from COVID-19, the findings of the report show that the care people with a learning disability receive is improving. But now is not the time to celebrate. People with a learning disability are almost two times more likely to die avoidable deaths than those without. Deep-rooted but changeable inequalities remain. The sector as a whole must now pull together to drive positive outcomes and close the gap in health outcomes.