LeDeR report republished today after retraction just three months after its long-delayed appearance

Background

For many years, evidence has shown that autistic people and people with a learning disability have reduced life expectancy. In September 2025, minister Stephen Kinnock said, “The latest report shows that on average, people with a learning disability die 19.5 years younger than the general population and are almost twice as likely to die from an avoidable cause of death. This is unacceptable.”

However, these have proven to be empty words, as no action has been taken to address the underlying issues. The Government points to a programme called ‘LeDeR’ as evidence that it is taking action. We have reported extensively* on the limitations and failings of that programme, which was created to learn from deaths of autistic people and people with learning disabilities.

Insufficient reporting of deaths of autistic people

As it stands, anybody can refer a death to LeDeR, and every death referred will be reviewed. That sounds more impressive than it is, because a lack of awareness of LeDeR means that deaths of autistic people without a learning disability have proven highly unlikely to be referred. The number of those deaths reported has been appallingly low in the first two years of their inclusion. As a result, both Kings College London, the authors of the national report, and NHS England, in their discussions with us, caution that the data cannot be considered representative of all autistic people. In other words, we cannot draw meaningful conclusions from the national data.

If we cannot draw conclusions, it should be clear that the programme is not fit for purpose. We need action from Government to improve the number of deaths of autistic people reported to LeDeR. Instead, Minister Kinnock told us “… we expect that, over time, greater awareness of the ability to notify LeDeR about these deaths will increase…” This is an unacceptably passive response, given the urgency. Instead, we need immediate action to publicise LeDeR across the whole country and guarantee enough deaths are reported to allow meaningful learning.

Delay, retraction, and republication

In addition to the programme’s inherent limitations, we have reported the unacceptable delay to the last two LeDeR reports. These were commissioned as annual reports yet the 2022 data were published in November 2023 and the 2023 data not until September 2025.

Unbelievably, just a few months after the much-delayed September 2025 publication, the report was retracted due to data omissions. Today, an updated report has been published. In a briefing yesterday, autism charities were told that an automated system had failed for six weeks in 2023, meaning that some data about cause of death were missing and therefore not included in the national report published in September 2025.

A reanalysis has now been completed, and the additional data have led to some changes. Deaths of people with learning disabilities classed as avoidable have not decreased as much as was previously reported – having reduced to 40.2% rather than 38.8%. Regardless of this small correction, it should be clear that even the lower figure would be wholly unacceptable, suggesting that around four in ten deaths reported in this group are avoidable.

For autistic people without a learning disability, numbers remain too low to draw meaningful conclusions and still no action is being taken to address that. The slight change in the new report includes two more deaths in the category of suicide, misadventure or accident. This further reinforces the problem of suicide in autistic people without a learning disability and again begs the question of why more isn’t being done to understand and tackle the problem, regardless of impotent words in the previous Government’s suicide prevention strategy.

National analysis contract ends in October this year

Finally, the contract for national analysis of LeDeR data ends later this year, after Kings College London reports on the 2024 data. We are now in 2026. We have repeatedly raised this with NHS England. Empty Governmental promises to review deaths cannot be taken seriously when no contract is in place to report on the 2025 data and no action is being taken to address major limitations that have been apparent for years.

What next?

We will continue to work with autistic people, those who support them, and other autism charities to raise this unacceptable issue with Government and push for meaningful action.

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Read the updated report via the Kings College website.