Yesterday, the NHS published a new policy for LeDeR, the Learning Disability Mortality Review programme. The programme will now also review the deaths of autistic people to understand why they died and help the NHS learn how to prevent other autistic people from dying.
The fact that too many autistic people die early is a public scandal. Every death is a tragedy that we must learn from and we owe it to every autistic person and their loved ones to do everything we can to stop this from happening. That includes learning when the worst has happened. We’ve been calling for the Government and NHS to investigate the deaths of autistic people for years. We’re delighted they’ve listened and proposed changes to the LeDeR programme. This is the right thing to do.
Dr James Cusack, CEO of Autistica
Autistica has pushed the NHS and Government to address the deaths of autistic people since our Personal Tragedies, Public Crisis campaign first called for the scope of LeDeR to be expanded in 2016. As a result, the Department of Health and Social Care made “closing the gap in life expectancy” a top priority for their Autism Strategy in 2018. In 2019, and the NHS Long Term Plan committed to tackling the “causes of morbidity and preventable deaths” for autistic people. We now work closely with NHS England to help deliver on that commitment, including partnering on a major project to develop and test health checks for autistic people.
You can read the policy or an easy read version on NHS England’s website.