Hospital administrative team discussing a patient record

NHS announce learning disability mortality review update

A programme aimed at improving the lives of people with a learning disability is set to specifically incorporate autistic people in their efforts to drive improvements in care, the NHS has announced.

The learning from life and death reviews programme (LeDeR) reviews deaths and mortality rates involving those with a learning disability in order to better understand their health outcomes and how improvements can be made.

These LeDeR reviews can give greater understanding to the health challenges faced by those with a learning disability, who can often have worse health outcomes than those without.

Working with stakeholders, including bereaved families, people with a learning disability and autistic people over the past 12 months, the NHS has developed a new policy which will focus not only on completing reviews but also ensuring that local health and social care systems implement actions at a local level to improve and save lives.

Under the new policy, these reviews will now extend to include all people who are autistic - who do not have a 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.

A focused review will then follow in instances were a reviewer feels a more detailed review is required.

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.”

Tim Nicholls, Head of Policy at the National Autistic Society, added: “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.”

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NHE May/June 2024

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