- Charity Autism Action say that lessons about preventable deaths in NHS and social care are not being learned and too many people are still dying needlessly
- Latest LeDeR report ‘Learning from Lives and Deaths: people with a learning disability and autistic people’ is published but charity says not enough action is being taken to learn from previous deaths and prevent future ones
- Charity says the new report includes 53 reviews of deaths in 2023 for autistic people who didn’t also have a learning disability – once again too few to provide useable data – yet the Government is simply waiting for this to improve rather than taking action to address it.
The publication of the annual LeDeR report was due in November 2024. The report has been published today with an accompanying Ministerial Statement, making it around 10 months overdue.
Campaigning charity Autism Action has been asking the Government about the whereabouts of the report since last year, whilst also calling for major improvements in how data is collected and improvements to healthcare are enacted.
Tom Purser, CEO of Autism Action, said:
“Autistic people and families could be forgiven for thinking that today’s LeDeR report is more about saving face than saving lives. There is simply not enough action evident in today’s report to suggest that the Government really understands the seriousness of the issue. The Government has given only a vague assurance that it is ‘committed to maintaining LeDeR going forward’ whilst not acknowledging its removal from the NHS Planning Guidance that actually directs NHS priorities. It is not enough to hope that local services will replicate good practice without including this work in published priorities, and in the absence of any national standards, targets, or accountability.
“Year after year, autistic people and people with a learning disability continue to die prematurely, and LeDeR reports much the same conclusions. The Foreword by people with learning disabilities who support the LeDeR programme called last year’s report the ‘SPOT THE DIFFERENCE REPORT’ because they ‘have been saying the same thing each year’. This year they feel the same: “We don’t want to be an empty chair at Christmas. We do not want to be just a memory or a photograph on the wall.” Yet the Government is still not taking action and the report leads to more questions than it answers. Data about autistic people without a learning disability is wholly inadequate, with no clear plans to improve it. That data is described in the report as ‘based on very small numbers’ and ‘not a representative sample’, which ‘cannot be extrapolated’.
“While this data reinforces that suicide is a real problem for autistic people, it can tell us nothing more than that, making it worse than a tick-box exercise. Worse still, the Government uses this data as an example of how it is ‘doing something’ about the problem. It is simply not acceptable for the Government to commission poor quality data and then use that poor quality as a reason not to take action.
“Sitting by and waiting for the data to improve by itself over the coming years, whilst more people die preventable deaths, is just not good enough. This is why Autism Action is taking steps to help fill these data gaps where we can by commissioning world-leading research into autism and suicide. In the meantime, if the Government wants to save lives we must see real leadership at a national level. This means improving and sharing information to end the scandal of the avoidable deaths of autistic people and people with a learning disability.”
The national LeDeR report analyses information from LeDeR reviews conducted by NHS Integrated Care Boards (ICBs) after the death of an autistic person or a person with learning disabilities. These reviews are not statutory, but anyone can report a death to LeDeR. The reviews look in-depth at the health and social care received by that person, aiming to learn lessons, improve services, and address the longstanding reduced life expectancy for autistic people and those with learning disabilities. The new NHS Ten Year Plan published earlier this year acknowledged that people with learning disabilities still die about 20 years earlier than others and that it needed to be addressed.
Jen Bridges-Chalkley was 17 when she died by suicide on 12 October 2021. At her inquest in January 2024, concluding in May 2024, the coroner said that her death could have been avoided with timely, multi-agency support. Jen was autistic. Jen’s mother, Sharren Bridges, is now an active campaigner for better mental health support for autistic people.
Jen’s mother, Sharren Bridges, said:
“Jen needed suitable intervention when we initially went to the GP when she was 11 and self-harming, but as she ‘wasn’t at crisis point’ they were unable to offer support. If support was given when she was 11 there is every chance that Jen wouldn’t have got to the point of suicidal ideation age 14, even at crisis point there was minimal support for Jen and even less for me as her Mum trying to care for a suicidal child.
“There were many times that appropriate interventions could and should have been put in place from both CAMHS and our local authority. Jen had multiple hospitalisations from age 14-17, there were many missed opportunities to give Jen the support, therapy and interventions at suitable times for Jen was in that could have saved her life. The minimal support that was offered to Jen wasn’t appropriate for her.
“It felt as Jen had Autism and ADHD of course she would suffer with her mental health and suicidal ideation as part of the course and that is a ‘’normal’’ part of having an autism and ADHD diagnosis. Which it absolutely is not the case, mental health services and the local authorities need to adjust their thinking and policies to acknowledge the wonderful and capable people within the autistic community that have so much to offer the world and make it a better place. This can only happen with the correct opportunities, support and societal changes for the autistic community to shine and thrive.
“The failings by CAMHS and my local authority significantly contributed towards Jen’s death. Things must change to save lives not face or money. Since Jen’s death I can’t see much if anything has changed for the better, if anything it has got worse.”
Abbi Smith was 26 when she died by suicide in 2022. Abbi was autistic with learning disabilities.
Abbi’s mother, Lisa Wolff, said:
“The LeDeR report’s 10-month delay is not just an administrative failure, it’s a moral one. Every month of inaction means more preventable deaths, like that of my daughter Abbi, who died by suicide in 2022 after the system failed to provide the timely, joined-up support she needed. This report repeats the same conclusions year after year, yet lacks the national standards, accountability and urgency to save lives. Poor-quality data and empty promises cannot protect those with a learning disability or autistic people; real change, driven by robust leadership, people with lived experience and timely, targeted action, is the only way to ensure that no family endures the heartbreak and desolation that we live with every day.”
Autism Action has previously highlighted the issues with the LeDeR repotr to Health Secretary Wes Streeting – with a letter signed by bereaved parents, campaigners and other charities. The charity and over 40 co-signatories called for LeDeR to be overhauled and reformed, to finally tackle the gap in life expectancy
For more information please contact media@autismaction.org.uk
