Bereaved families, charities and campaigners call for overhaul of ‘sidelined’ reporting system designed to understand and reduce preventable deaths

21 Jul 2025

Major report designed to learn from and prevent the premature deaths of autistic people and people with learning disabilities is almost a year delayed
Bereaved families say that lessons about preventable deaths in both NHS and social care are not being learned and too many people are still dying needlessly
A joint letter to Health Secretary Wes Streeting with over 40 signatures has been sent today calling for the report to be prioritised

A letter with over 40 signatures including those from bereaved families and disability campaigners has been sent to Health Secretary Wes Streeting today, demanding action to get the LeDeR programme – ‘Learning from Lives and Deaths: people with a learning disability and autistic people’ – back on track and save lives.

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 month acknowledged that people with learning disabilities still die about 20 years earlier than others and that it needed to be addressed.

The publication of the annual LeDeR report was due in November last year – almost 8 months ago. The Department of Health and Social Care have confirmed that it will be held until Parliament returns in September, which will make this report around 10 months overdue.

Campaigning charity Autism Action has been asking the Government about the whereabouts of the report since last year. Without a sufficient response, they have taken action by highlighting the issue to Health Secretary Wes Streeting – with a letter signed by bereaved parents, campaigners and other charities. Autism Action and co-signatories are also calling for LeDeR to be overhauled and reformed, to finally tackle the gap in life expectancy.

Katherine Eastland, parent of Jessie Eastland-Seares, has signed the letter. Jessie was 19 when she died at a Sussex Partnership NHS Foundation Trust hospital called Mill View in Hove on the 17 May 2022. Jessie was autistic with a number of other complex conditions. The jury at Jessie’s inquest recorded that there were systematic failures in the health and social care received by Jessie, which led to a series of events resulting in regular bouts of self harm. This ultimately led to her death.

A LeDeR review was opened but has only just been returned last month, three years after her death.

Katherine Eastland, parent of Jessie Eastland-Seares, said:

“Jessie’s death was preventable and would not have happened had she had compassionate, autism-informed and holistic care. Many things need to change to stop these tragedies happening. Services are divided so that they cannot treat the whole person. It feels that lessons from reviews are not being implemented. The voices of carers and cared for are not being heard, and considerable time is spent on managing and blaming them instead. LeDeRs are simply not happening in anywhere near the volume they should. The forms those responsible for producing the report have to use are clunky and not fit for purpose. The outcome for Jessie’s LeDeR was that “responsiveness of ICS services to the person’s needs fell far short of the expected standard and this contributed to the cause of death”.

“Jessie wanted to see system change and proper care, looking at the person and their needs and not trying to fit autistic and disabled people into a failed mental health ‘model’.

“These were Jessie’s own words: To all the “professionals”, I think you need to focus on what you are actually looking at. I’m not your “case”. I’m not a problem that needs to be solved. I’m a person, not a problem. If people accepted everyone for who they are, we would already be in a better society. The fault in our society is that you can’t be different – you can’t be yourself.”

Tom Purser, CEO of Autism Action, said:

“So many families and charities have been working tirelessly to understand why this report has been so delayed. We’ve been talking to politicians and policy officials for some time now without being given an explanation about the lack of progress. We have reached an impasse and there needs to be an urgent shift. Now 10 years into the LeDeR programme and autistic people and those with learning disabilities are still dying preventable deaths. There is simply not enough attention being paid as to why. By creating such a huge delay in issuing this report, and by repeatedly giving us empty reassurances, the Government is systemically devaluing the lives of autistic people and those with learning disabilities.

“Despite recognising a huge gap in life expectancy, the only available information that the Government can use to enact real change has been left unseen.

“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.”

For more information please contact media@autismaction.org.uk