Government confirms LeDeR will be published in September

The government has confirmed that the next LeDeR report will be published “as soon as possible in September, alongside a Written Ministerial Statement” and says it is committed to preventing and learning from avoidable deaths for people with a learning disability and autistic people.

The confirmation came in a response to a letter written by Autism Action and over 200 signatories calling for the Learning from Lives and Deaths: people with a learning disability and autistic people (LeDeR) programme to be put back on track to save lives.

The reply from Minister for Care, Stephen Kinnock MP, attributes delays in publication of the report, which should have been published in late 2024 and is now over 9 months late, to “practical data quality issues.”

It said: “Our thoughts and sympathies go out to those who have lost loved ones, including those who have signed this letter and are represented by them.”

LeDeR findings needed more work to be “clearly interpreted”

He goes on to say that there has been no intent to withhold or change the findings of the report, but more work was needed to correct apparent inconsistencies and add definitions of technical language to ensure the findings were transparent and could be “clearly interpreted”.

The Minister adds that although widely published, the number of deaths for autistic people without a learning disability has been very small. He also makes reference to deaths by suicide, which would mean that the LeDeR process would be halted while the coronial process proceeds.

But he expects that over time, greater awareness of the ability to notify LeDeR of these deaths will increase, leading to greater understanding about premature mortality.

Autism Action calls for more transparency around avoidable deaths

Austism Action said that the “response does not reflect the urgency of so many people dying preventable deaths, appearing content to wait for awareness of the ability to notify LeDeR about these deaths to increase over time.”

It added: “The Government does not currently review every death or a person with a learning disability, or who is autistic.  Other than in the case of children, via the National Child Mortality Database, which should be considered an exemplar of how learning from deaths can be done, every death is not currently reviewed.

“The patchwork system of reports, reviews and inquests often fails to achieve the very thing that it was created to do – to learn from the individual deaths, to identify common themes and to lead to actions which will prevent future deaths and narrow the life expectancy gap that autistic people and people with a learning disability unjustly face.

“Autism Action is committed to working in partnership with bereaved people, people with lived experience and other organisations to put pressure on the Government to increase transparency, improve data collection and publication and to make real steps to save lives, not simply talk about it.  We will be watching closely over the coming weeks for how the Government now responds and we will take action accordingly.”

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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