We have been informed by NHS England that the LeDeR report (Learning from lives and deaths: People with a learning disability and autistic people) has now been retracted, just three months after its long-delayed publication.
The NHS England email stated “Some of the data was missing and incomplete at the time of analysis. To ensure the report is as accurate and as complete as possible, the existing report is being withdrawn and will be republished with the additional analysis by King’s College London in January 2026.”
The LeDeR report is the Government’s mechanism to learn from deaths of people with learning disabilities and autistic people, who are known to die many years younger than other people. Yet the initiative has been deprioritised in recent years. The data collection process has never been statutory, meaning many deaths are not reported, and this has particularly been the case for deaths of autistic people who didn’t have a learning disability.
We wrote to the Health Secretary, Wes Streeting, in July this year, along with many others, including bereaved family members, people with lived experience and other charities. We thank everyone who supported that work. We received a response from Minister Stephen Kinnock in August, but this provided little reassurance about the Government’s commitment to improving LeDeR and using it to save lives.
We understand that responsibility for these issues has now passed to Minister Zubir Ahmed. We have therefore written to Minister Ahmed to raise concerns about this report’s retraction, and to seek meaningful commitment from the Government to continue with the national LeDeR programme and address its current limitations.
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