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LeDeR - learning disability mortality reviews

Checked: 23-04-2022 by Vicky Ryan Next Review: 23-04-2023

What is LeDeR?

LeDeR is a mortality review process. The national programme has been running for 5 years. GP notes are an essential part of the review.

In January 2022 NHSE introduced reporting of deaths for adults 18y+ with a diagnosis of autism only (no learning disability).

The process reviews the last year of life and the death of a person with a learning disability – and now patients with autism.

The aim is to identify examples of good quality care and any areas of improvement and to identify themes in the death of people with a learning disability and/or autism.

Reporting a death to LeDeR

Anyone can report a death including health care staff, social care staff, administrative staff, family members and others who knew the person.

Learning disability deaths are usually reported by staff in hospitals, care homes or family members who supported the person during their last days.

However for patients with autism only, GP’s may be the only service in contact with the autistic patient

For more information see the website: https://leder.nhs.uk

Actions for Primary Care

Awareness of LeDeR process

On request, provide the LeDeR reviewer with a print out of the GP medical records in a timely manner. No additional consent is needed.

Accurate GP register of patient with a learning disability

Resources: See the Annual Health Checks for people with learning disabilities page on Remedy and look under Resources “learning disability register and coding”

Accurate GP record of patients with autism diagnosis

Where GP’s are the only service supporting an autistic patient who dies, you need to report the death to the LeDeR programme

https://leder.nhs.uk/report

(GP’s are not required to duplicate reporting of learning disability deaths to LeDeR unless the patient lived alone, without support services or next of kin)

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

Information provided through Remedy is continually updated so please be aware any printed copies may quickly become out of date.