Learning disability mortality review will include autistic people for the first time

Too many people with learning disabilities die earlier than they should and a programme which aims to prevent this and improve their care, will for the first time include people with autism, according to the NHS.

People who have a learning disability and those with autism often have poorer physical and mental health than other people and may face barriers to accessing health and care to keep them healthy. Too many people with a learning disability and autism are dying earlier than they should, many from things which could have been treated or prevented.

The learning from life and death reviews programme Learning Disabilities Mortality Review (LeDeR) 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.

The LeDeR has been working with stakeholders including bereaved families and people with a learning disability and those with autism 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.

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 where a reviewer feels a more detailed review is required.

'Autistic people and those with learning disabilities deserve the best possible care'

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.”

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 of people with learning disabilities and autism.”

'We welcome this crucial change from the NHS'

Dan Scorer, head of policy at the learning disability charity Mencap, has welcomed the announcement that recommendations from LeDeR reviews are acted on locally and, ultimately, future deaths are prevented.

Mr Scorer 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 so many face.”

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.”

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.

To read Learning Disability Mortality (death) Review programme, go to: https://www.england.nhs.uk/learning-disabilities/improving-health/mortality-review/