Guidance

Learning from Lives and Deaths (LeDeR programme)

LeDeR is a service improvement programme for people with a learning disability and autistic people.  LeDeR works to:

  • improve care for people with a learning disability and autistic people
  • reduce health inequalities for people with a learning disability and autistic people
  • prevent people with a learning disability and autistic people from early deaths

A LeDeR review looks at key episodes of health and social care the person received that may have been relevant to their overall health outcomes.  It focuses on areas that need improvement and areas of good practice.

These examples of good practice can be shared across the country which helps to reduce inequalities in care for people with a learning disability and autistic people and reduces the number of people dying sooner than they should.
The General Practice user guide is available here and gives further information about the programme. It also tells you how you can support it, if asked and explains when to share patient identifiable information with LeDeR review teams.
If a patient has registered to opt out of sharing data via the National Data Opt Out scheme, NHSE will be alerted to this, and not proceed to a LeDeR Review.

Requirements in General Practice

Primary care records are needed to understand the person who has died.  Records are also needed to understand if there are lessons to be learned from their death.  A LeDeR reviewer needs to access primary care records and, or talk with the GP about the person who died.

Once the LeDeR team receive a notification on the LeDeR platform, a secure link is sent to the GP practice for the records to be uploaded.  The link expires after 2 weeks at which point another link will be sent.
The LeDeR reviewing team normally asks for 3 years’ worth of records initially, and will then liaise with the practice if they require any additional information.
Note:  You can offer to have a detailed telephone conversation with the reviewer instead.
GP practices should always notify LeDeR about the death of any patient registered with the practice who has a learning disability or who is autistic.
Notification takes moments and is via a simple online notification form.
Further information about LeDeR can be found online in the national LeDeR policy and on the national LeDeR website.

General Medical Council’s (GMC) guidance

The General Medical Council’s (GMC) confidentiality guidance advises that doctors should disclose relevant information about a patient who has died where disclosure is authorised under section 251 of the NHS Act 2006.
Paragraph 137 of the GMC guidance advises:

  • 103 - In England, Wales and Northern Ireland, statutory arrangements are in place for considering whether disclosing personal information without consent for health and social care purposes would benefit patients or the public sufficiently to outweigh patients’ right to privacy. Examples of these purposes include medical research, and the management of health or social care services. There is no comparable statutory framework in Scotland.
  • 104 - Section 251 of the National Health Service Act 2006 allow the common law duty of confidentiality to be set aside for defined purposes where it is not possible to use anonymized information and where seeking consent is not practicable.
  • 105 - You may disclose personal information without consent if the disclosure is permitted or has been approved under regulations made under section 251 of the National Health Service Act 2006. If you know that a patient has objected to information being disclosed for purposes other than direct care, you should not usually disclose the information unless it is required under the regulations.”

The LeDeR Local Area Contact (LAC) for Lincolnshire is Claire Noble (Senior Commissioning Manager for Learning Disability and Autism)

Email: licb.mhldateam@nhs.net (Team Secure email generic)
Secure Email: Claire.Noble9@nhs.net (Secure personal)
For further information and support contact the LeDeR team by email: support.leder@nhs.net
First Published
8 June 2023
Updated On
8 June 2023
Due to be Reviewed
8 June 2024
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