Government accused of 'sitting on' delayed report into learning disabled deaths
The Department of Health and Social Care is being accused of 'dragging their feet' and 'sitting on' the findings by Parliamentarians and disability campaigners, who describe the delay as 'appalling'.
Wes Streeting is being urged to publish the report immediately or provide an explanation for the unprecedented delay.
The Learning from Lives and Deaths report, known as LeDeR, is an annual investigation into the deaths of every adult with a learning disability and autism with the aim of preventing future deaths.
Established in 2017, it is the only official record of how people with learning disabilities died and in what circumstances.
It is commissioned by NHS England and carried out by King's College London, who submit its findings to ministers to publish.
Official data shows people with a learning disability die 23 years earlier than the general population.
The unpublished report relates to deaths in 2023 and was due to be released last year.
Every other LeDeR has been published on time, and the current delay means the circumstances around deaths in 2023 will not be known until late 2025.
ITV News has learnt the report was submitted by King's College and handed to NHS England and the Department of Health and Social Care last December.
I have been told the report has since been through 'several review cycles' with King's College and was officially finished in June, yet there has been no explanation for the delay.
Campaigners and policy experts were expecting it to be released before Parliament's summer recess, but ITV News understands it will not be published until autumn at the earliest.
Liberal Democrat peer Lord Scriven, who has spoken to ITV News about the death of his nephew, who was learning disabled and autistic, has submitted two urgent questions to the government seeking an explanation for the delay.
He is yet to receive a response.
'The LeDeR report has experienced an unacceptable delay in its release,' he told ITV News.
'The extended wait for the LeDeR report's publication raises important questions. It suggests either that the report contains findings which are challenging for the Government and healthcare system or that the preventable deaths of people with learning disabilities are not being given the priority they deserve by those at the top of Government.
'Like many, I am keen to see this report made public. I am calling for the immediate publication of the LeDeR report and would welcome an explanation from Wes Streeting regarding the ongoing delays.'
Professor Sara Ryan began researching deaths of learning disabled and autistic people after her son Connor died in 2013.
He was autistic and had epilepsy, and he drowned in a bath while unsupervised at an NHS facility.
She told ITV News that the delay of LeDer is appalling.
'We haven't had a report since the end of 2023, the 2024 report, which was due out at the end of last year, hasn't been published yet and has been held for incomprehensible reasons, and nobody is really saying why,' she said.
'We are facing these almost intractable problems about people dying earlier for no reason - constipation, drowning in a hospital bath, not receiving any healthcare whatsoever - conditions that people don't die of in a country like the UK.
'Yet the one mechanism, the one report we have, that provides data around these deaths is stuck somewhere - I have no idea where - but it's stuck and I find that is truly appalling."
A Department of Health and Social Care spokesperson said: 'We inherited a situation where the care of people with a learning disability and autistic people was not good enough and we recently published a code of practice on training to make sure staff have the right knowledge and skills to provide safe and informed care.
'We are committed to improving care for people with a learning disability and autistic people. The Learning from Lives and Deaths report will help identify key improvements needed to tackle health disparities and prevent avoidable deaths.'
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