Back in 2015, the NHS proudly launched the “world’s first national review of deaths of people with learning disabilities”.
More than a decade and several iterations later, the project’s great promise has been overshadowed by delays and questions over its quality, efficacy and accuracy.
The programme was announced by the NHS following a government-commissioned investigation, the 2013 Confidential Inquiry into Premature Deaths of People with Learning Disabilities, which recommended a national analysis of this kind.
Aim to lower early deaths
This national mortality review programme came to be known as Learning from Lives and Deaths – People with a Learning Disability and Autistic People (styled as LeDeR).
It was presented as an “independent project to help the NHS reduce premature mortality for people with learning disabilities”, supporting health and care professionals “to identify, and take action on, the avoidable contributory factors leading to premature deaths in this population”.
Since then, the reviews have confirmed what experts and families have known for years – that people with learning disabilities die younger than the general population, many deaths are avoidable and this is owing to delays in diagnosis, a lack of reasonable adjustments and poor communication.
The latest report, which records deaths from 2023, was meant to be published in 2024 but its release was delayed until September 2025 because of data problems.
Soon after, the work was abruptly withdrawn over what NHS England described as a “technical issue” – causes of death had been incorrectly submitted.
Amid criticism that the incorrect data meant deaths were underreported, the report was finally re-released in January.
As for its findings, one in four deaths of people with severe or profound and multiple learning disabilities over 2021-23 were from conditions that could have been treated – compared to one in 13 in the general population. The average age of death for a person with a learning disability is 62.5 years, similar to in previous years – the equivalent for the general population is 82.
Critics say it is difficult to have faith in a programme that has been dogged by delays and where the analysis, which aims to drive healthcare improvement, is in question alongside criticism of the quality of some of the reviews.
It looks like less scrutiny is being given to the deaths of people with learning disabilities
A decade on from its launch, the project does not seem to be making much difference to health inequalities.
Professor Chris Hatton, professor of social care at Manchester Metropolitan University and a Community Living columnist, said in September (before the latest report was withdrawn): “There are a few things about the report that I found a bit odd. The first is that the report is listed as a 2024 report [of LeDeR information in 2023], even though it wasn’t made public until September 2025. Listing this as a 2024 report makes invisible the long delay in its publication.”
Hatton also took issue with the report’s foreword which said “due to unforeseen pressures on the NHS, there have been somewhat fewer completed reviews than anticipated, affecting reviews during the latter part of 2023 in particular”.
Such pressures, he said, “were quite foreseeable” and the programme has struggled since inception to get reviews completed.
He said that “late” reviews of 2023 deaths could have been included in the analyses – “or is it that these missing reviews are never going to happen?”
He concluded: “Across the piece, it looks like less attention and less scrutiny are being paid to the deaths of people with learning disabilities.”
The problems have left campaigners and families frustrated, with a combination of delays and questions over data undermining the aim improving services for those who experience enduring health inequalities.
As Learning Disability England put it: “Learning delayed is learning denied… LeDeR isn’t just numbers, it’s about real lives lost and preventable deaths, and every delay feels like another barrier to change.”
