People who have a diagnosis of autism without a learning disability will be included in the Learning Disability Mortality Review (LeDeR) programme for the first time, NHS England has said.
The move is one of several changes to the programme, which aims to improve care, reduce health inequalities and prevent premature mortality of people with a learning disability and/or autism by reviewing information about the health and social care support people received.
Launched in 2015, LeDeR had previously included those with a learning disability, but from June 2021, this will be extended to include all people who are autistic – who do not have a learning disability – as well.
The changes are detailed in a new policy, which the NHS said will focus not only on completing reviews but on ensuring that local health and social care systems implement actions at a local level to improve and save lives.
Going forward, all notifications of a person’s death will receive an initial review by the local LeDeR team, which will include talking to their family, their GP or look at the records, and at least one other person involved in the person’s care. If a reviewer feels a more detailed review is needed, a focussed review will follow.
All eligible people from an ethnic minority background will receive a focussed review and the families of anyone aged four and over with a learning disability or autism can request one.
NHS England also announced that a new web platform will be launched in late spring to streamline reviews, improve their quality and facilitate access to records as well as improving reviewer training.
From September, LeDeR will be incorporated into the routine quality reporting arrangements of Integrated Care Systems and not sit separately from it, to improve learning and action locally.
Minister for Care Helen Whately said: “Autistic people and those with learning disabilities deserve the best possible care. Including the deaths of autistic people in the LeDeR mortality review is an important step that will ensure the health and care system is learning lessons and working to improve life for people with a learning disability.
“This update will help us to take further strides in eliminating health inequalities and improving the care of hundreds of thousands people with learning disabilities and autism.”
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’s 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.”