NHS update to learning disability mortality review

Autistic people will now be specifically included in an improved and expanded LeDeR programme to drive improvements in care, the NHS announced today.

The move is part of changes to the learning from life and death reviews programme (LeDeR) which aims to make improvements to the lives of people with a learning disability.

The NHS has worked with stakeholders including bereaved families, people with a learning disability and autistic people over the past 12 months to develop the new policy which 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.

The new policy, which looks at the life of a person as well as their death, will also now extend to include all people who are autistic – who do not have learning disability – as well.

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.

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 the ICS and not sit separately from it, to improve learning and action locally.

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.

“The new policy developed with experts has patients and their families at its heart, and we are committed to making sure that a person’s life is a focus of any review, as well as their death.”

The policy was developed in collaboration with over 400 people, including people with a learning disability and their carers, bereaved families, commissioners, health and care providers, members of the LeDeR workforce, local authorities, social care providers and voluntary sector organisations, and LeDeR academics and policy experts.

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.

“This change will be vital for the NHS’ efforts to improve care for autistic people.”

Dan Scorer, Head of Policy at the learning disability charity Mencap, said: “LeDeR plays a vital role in identifying potentially avoidable deaths of people with a learning disability, and highlighting the policy changes needed to address the unacceptable health inequalities that so many face. Today’s announcement sets out important changes to make sure recommendations from LeDeR reviews are acted on locally and, ultimately, that future deaths are prevented.”

Background information

• The learning from life and death reviews programme (LeDeR) was formally known as the learning disability mortality review.
• You can find the published policy here: Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) policy 2021.