Bereaved families demand answers on LeDeR report delay

Tom Purser, CEO of Autism Action, added: “So many families and charities have been working tirelessly to understand why this report has been so delayed. 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.”

LeDer forms are not fit for purpose

Amongst the signatories is Katherine Eastland, whose daughter Jessie Eastland-Seares died in May 2022 at a Sussex Partnership NHS Foundation Trust hospital called Mill View in Hove.

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 was only returned last month, three years after her death.

Katherine Eastland 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”.

“The fault in our society is that you can’t be different – you can’t be yourself.”

Before she died, Jessie had said that she wanted to see a system change and proper care where professionals looked at the person and their needs and not try to fit autistic and disabled people into a failed mental health ‘model’.

She wrote: “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.”

You can sign the letter here.