Chris Packham backs call for delayed report into autistic deaths to be published
He is among campaigners who have written to Health Secretary Wes Streeting to say the country is 'standing by year after year while vulnerable people die'.
The latest Learning from lives and deaths report (LeDeR) – expected to show data for 2023 – was due to be published around November last year but it is understood it has been held up over 'practical data issues'.
The LeDeR programme was established in 2015 in an effort to review the deaths of people with a learning disability and autistic people in England.
Annual reports are aimed at summarising their lives and deaths with the aim of learning from what happened, improving care, reducing health inequalities and preventing people with a learning disability and autistic people from early deaths.
In the letter to Mr Streeting, signed by various groups including charities Autism Action and Mencap as well as bereaved families, the delay to the latest report was branded 'unacceptable'.
They said: 'It took at least 17 years for the Government to establish this vital initiative after the 1998 finding that people with learning disabilities were 58 times more likely to die before the age of 50 than the general population.
'Although it was established to 'get to the bottom of why people with learning disabilities typically die much earlier than average, and to inform a strategy to reduce this inequality,' 10 years later – too many people are still dying premature, preventable deaths.
'In response, the Government is showing a shocking lack of urgency and has let the only discernible tool to understand and act on these deaths be caught up in delay and bureaucracy.'
The most recent report, which showed data for 2022, confirmed care and outcomes for people with learning disabilities are still often below acceptable standards compared with the general population.
Of the 2,054 adults with a learning disability who died that year and had a completed recorded underlying cause of death, 853 (42%) had deaths classified as avoidable.
This was down on the 2021 figure of 50% of avoidable deaths among adults with a learning disability, but was 'significantly higher' than the percentage for the general population across Great Britain, which was 22.8% in 2020 – the latest data available at that time.
Last month, the parents of an autistic teenager who died after being prescribed medication against his and his parents' wishes hailed the publication of guidance they hope will safeguard others as a 'significant milestone'.
A report in 2020 found 18-year-old Oliver McGowan's death four years earlier at Southmead Hospital in Bristol was 'potentially avoidable'.
He died in 2016 after being given the antipsychotic Olanzapine and contracting neuroleptic malignant syndrome (NMS) – a rare side-effect of the drug.
An independent review later found that the fit and healthy teenager's death was 'potentially avoidable' and his parents, Paula and Tom McGowan, said their son died 'as a result of the combined ignorance and arrogance of doctors' who treated him.
In June, his parents – who have campaigned since his death for improvements in the system – welcomed the publication of new guidance aimed at ensuring safer, more personalised care for people with a learning disability and autistic people.
Learning disability charity Mencap described the delay to the latest LeDeR report as 'disappointing and worrying', and said the Government must 'not shy away from the uncomfortable truth that for many years the healthcare system has failed people who are already marginalised in so many ways'.
Autism Action chief executive Tom Purser accused the Government of 'systemically devaluing the lives of autistic people and those with learning disabilities' by delaying the long-awaited annual report and giving campaigners and families 'empty reassurances'.
He added: 'There must be systemic changes in the way this information is collected, recorded, shared and acted upon – and it needs to be accountable and written into law. We are calling on this data to be published annually and independently of the Government and the NHS.
'Without these changes the Government has nothing to learn from and more vulnerable lives are at stake.'
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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