Learning Disability and Autistic People Report is a Clear Signal That More Work Still Needed
People with learning disabilities and autism in England are dying almost 20 years younger than the rest of the population, a long-awaited report has revealed.
The 2023 Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) report , which examines the circumstances surrounding the deaths of people who have a learning disability (and/or autism) in England, analysed the deaths of 3,556 people, notified between January and December 2023, and established a number of findings.
Amidst the concerning picture of premature or avoidable deaths, delayed treatments, lack of reasonable adjustments, gaps in care and where diagnosis and treatment guidelines were not met, there are, the report says, some improvements to acknowledge.
The average age of death has increased slightly on previous years and the numbers of individuals who experienced care that was noted to be good has risen. The percentage of “avoidable deaths”, where death occurs in someone under the age of 75 to a condition deemed preventable, treatable, or both, has fallen from 46 per cent in 2021 to 39 per cent in 2023.
Professor Andre Strydom, the report’s Chief Investigator and a Professor in Intellectual Disabilities said, “Our analysis of this year’s data has once again established that the number of avoidable deaths in people with a learning disability has fallen. While this improvement is undeniably heartening, we cannot overlook the context, as the rate is almost double that of avoidable deaths in the general population (21 per cent).”
The analysis also found that 37 per cent of cases reported some form of delay in care or treatment, while 28 percent reported instances where diagnosis and treatment guidelines were not met.
Rebecca Gray, mental health director at the NHS Confederation, said: “This report lays clear that despite improvements in the rates of preventive deaths for people with learning disabilities, significant inequalities still remain – particularly for those from ethnic minority groups.
“It will take sustained effort from across the health sector to ensure these gaps are closed further and faster, through early monitoring and preventive interventions. Physical health checks for people with learning disabilities are an important part of this, and we must ensure that all people with learning disabilities are offered and able to access annual health checks.
“While the new data on preventable deaths of autistic people needs to be interpreted with caution due to low numbers, it reflects the high levels of co-existing mental health issues for people with autism. Members are increasingly recognising the need to adapt services for autistic people to better meet their needs.”
Kathryn Marsden OBE, Chief Executive of SCIE, said: “This report is a stark reminder of the profound inequalities in health and social care outcomes facing people with a learning disability and autistic people. It is indefensible that people with a learning disability still die, on average, almost 20 years earlier than the general population and are three times more likely to die from a condition which could have been treated. These are not just numbers; they are lives cut short.
“SCIE has analysed the CQC’s reports of local authority performance and found that the Mental Capacity Act isn’t being applied consistently. This leaves people without the protections they are entitled to. The LeDeR report confirms these concerns. The lesson is clear: we must stop treating these failings as inevitable and start treating them as urgent priorities. What’s needed now is action.
“We need government, commissioners, providers and frontline professionals to pull together to eradicate these inequalities and close the gap in life expectancy. That means delivering on the basics: ensuring social care packages genuinely meet people’s needs, the Mental Capacity Act is upheld in every case, and high-quality care is accessible to everyone who needs it, when they need it.”
