The Learning Disability Mortality Review (LeDer) programme has been expanded to include autistic people with the aim of eliminating health inequalities and improving the care of hundreds of thousands people with learning disabilities and autism.

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.

What is LeDer?

The LeDeR Programme is a world-first. It is the first national programme of its kind aimed at making improvements to the lives of people with learning disabilities.

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 focused review will follow.

All eligible people from an ethnic minority background will receive a focused 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.

NHS must be able to learn from what happened

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.

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.”