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People with autism included in LeDeR programme for first time

by Jess Hacker
24 March 2021

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People who have a diagnosis of autism without a learning disability will be eligible for a review under the Learning Disability Mortality Review programme (LeDeR) from June 2021, NHS England has said.

It is one of several changes to the programme detailed in a new policy from NHS England, which outlines the core aims and values of LeDeR and the expectations it places on health services.

People with autism have been included to improve data about their lives and deaths, the document said.

The programme, established in May 2015, aims to improve health outcomes for people with learning disabilities by reviewing care records and speaking with families after a person’s death.

Under the new policy, reviews will now look at a person’s life and the care they received, alongside their death, with local LeDeR teams expected to speak with a person’s family or their GP, and at least one other person involved in their care.

Reviewers will also no longer make recommendations for each review but will instead present areas of concern to a local panel, the document said.

It added that families also have the right to request a focused review for their relative – which looks at some parts of a person’s care in more detail – but these will be automatically completed for every person from a Black, Asian or Minority Ethnic background ‘due to significant underreporting’.

In the years 2021-2023, all deaths of adults who have a diagnosis of autism but who do not have a learning disability will also have a focused review, the policy said.

A new web service is also due to launch in spring, which will be used to access a person’s records and improve reviewer training.

The changes to the review process will need to be implemented by integrated care systems (ICSs) by 1 June 2021, in line with the launch of the web platform, NHSE said.

‘It will be the responsibility of ICSs to ensure that appropriate communications are in place for these in collaboration with their regional colleagues,’ it added.

ICS accountability

The policy also sets out a number of changes that ICSs will need to implement by April 2022 at the latest, subject to the legislative changes relating to ICSs being passed in the coming months.

This includes establishing a local governance group or panel, which will consist of people from across the ICS who have responsibility for the quality of services, the document said.

The changes also mean that ICSs will become responsible for ensuring the delivery of LeDeR reviews – a responsibility which currently lies with clinical commissioning groups (CCGs).

ICSs will also be responsible for ensuring actions from reviews are ‘implemented to improve the quality of services for people with a learning disability and autistic people to reduce health inequalities and premature mortality’, NHSE said.

The policy said that NHSE will hold the organisations accountable for delivering on these findings, , ‘so that ICSs improve the ways that local health and care services meet the needs of people with a learning disability and autistic people’.

‘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,’ the document said.

As each ICS will likely have a different governance arrangement, it ‘will be the responsibility of individual ICSs to determine how LeDeR can best be governed within its own evolving structures,’ it added.

According to the policy, each ICS should develop an implementation plan for LeDeR by 30 September 2021.