The NHS learning disability mortality review (LeDeR) has been updated to include a section to focus on people with autism.
As a landmark move to update the review, it is hoped the newly expanded literature will provide greater insight into the lives and mortality of people with learning disabilities.
The new policy has been created by speaking to bereaved families and the review will suggest improvements to care. And, for the first time, the report has included the lives and deaths of autistic adults who do not have a learning disability.
The report also has a secondary goal of reducing health inequalities. The review makes a concerted effort to reach out to the families of those who have died with a learning disability, and those who currently have a learning disability, so that the review can accurately reflect the experiences of who it represents.
Claire Murdoch, mental health and learning disabilities director at NHS England, said: “Now in its fourth year, we have a significant amount of data to help improve care for people with a learning disability, and we are committed to ensuring people who are autistic also get the very best care.
“Improving the lives of people with a learning disability involves a range of teams pulling together, including the local NHS and local authorities working hand in hand, and we are now taking the opportunity to develop and build on the LeDeR programme to drive improvements locally where it will make a difference to patients.”
Built into the new review process is a formal plan to deal with the death of someone with a learning disability. A person’s death will receive an initial review by the local LeDeR team, which will include looking at the records and talking to their family, GP or at least one other person involved in the person’s care.
If a reviewer feels a more detailed review is needed, a focused review will follow. This is also available to every BAME family, due to significant under-reporting in the BAME community and the consensus that early mortality disproportionately affects BAME communities.
Additionally, a web platform will be set up over the spring period so clinicians and families can view the progress of their review online. It will also support reviewers with their training.
Tim Nicholls, Head of Policy at the National Autistic Society, said: “We welcome this crucial change from the NHS, which brings autistic people within the LeDeR programme and will help make sure lessons can be learned.
“It is a tragedy for anyone’s life to be cut short, and the NHS must be able to learn from what happened. This is particularly important for autistic people who face unacceptable health inequalities – often because of poor understanding of autism and the best way to support autistic people.”
The policy report was contributed to by over 400 people and you can read it online here .