Professor Umesh Chauhan and Christina Roberts were part of the collaborative research team
University of Central Lancashire (UCLan) academics 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.
Involving UCLan, King’s College London and Kingston University researchers, 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 has again highlighted some important reasonable adjustments which lead to improved care across health and social care"— Umesh Chauhan, UCLan Professor of Primary Care
Professor Chauhan 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.”
The report also highlighted a sharp drop in the number of deaths due to Covid-19 – from 24 per cent of all causes of death in 2020 to 19 per cent in 2021 and 6 per cent in 2022 for adults with a learning disability.
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 Andre Strydom, the report’s Chief Investigator and a Professor in Intellectual Disabilities at King’s Institute of Psychiatry, Psychology & Neuroscience, 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.
"It is reassuring to see age at death increasing, while avoidable deaths continue to decrease"— Professor Andre Strydom, the report’s Chief Investigator
“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 report’s foreword was written by the Staying Alive and Well group, consisting of 10 people with learning disabilities. 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.
She said: “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.”