NHS to include autistic people in update to learning disability mortality review programme

Autistic people will now be specifically included in an improved and expanded life and death review programme to drive improvements in care, the NHS has announced.

30/03/21

NHS to include autistic people in update to learning disability mortality review programme

The NHS will now specifically include autistic people in its update 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 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 Integrated Care System (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 the NHS now has a significant amount of data to help improve care for people with a learning disability.

“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.”

Charities and organisations working with autistic people have welcomed the change.

Tim Nicholls, Head of Policy at the National Autistic Society, said the change 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.”

Dan Scorer, Head of Policy at the learning disability charity Mencap, said that LeDeR plays a “vital role” in identifying potentially avoidable deaths of people with a learning disability, adding that the inclusion will highlight policy changes needed to address the unacceptable health inequalities that so many face.

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