What is the Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) programme?

The aim of LeDeR is to drive improvement in the quality of health and social care services delivery and to help reduce premature mortality and health inequalities for people with a learning disability. As of late 2021, the programme includes improving services for autistic people.

Whose deaths should the LeDeR team be told about?

All deaths of people with a learning disability should be notified on the LeDeR website. This is so that we know how many people with a learning disability die each year and more about their lives and deaths. Soon, you will be able to tell us about the deaths of autistic people who do not have a learning disability.

Whose deaths will be reviewed?

All deaths will be reviewed, regardless of whether the death was expected or not, the cause of death or the place of death. Children and young people’s deaths between the ages of 4 and 18 are reviewed as part of the child death review programme and the data is shared with LeDeR.

What is the process of reviewing deaths?

All deaths will receive an initial review. If any concern or further learning is identified, or if the person is from a Black, Asian or minority ethnic background, a focused review will be held. Read more about the process here.

What happens if the person who died was not registered with a GP?

LeDeR should still be told about the person’s death and the Regional Coordinator will lead discussions to decided how to proceed with a review on a case-by-case basis.

How does LeDeR fit with existing local and national reviews of deaths?

There are a number of different review processes (e.g., child death review, safeguarding adults review, review of deaths of people in hospitals) that might be required for any one death. If this is the case, we will work together to do a LeDeR review so that we try to avoid unnecessary duplication. Reviewers will make it clear to family members where and how the LeDeR process links with other reviews, or investigation processes.

Will families automatically be informed of the review process even if they were not involved with the person who died?

It will be up to the reviewer to make the decision based upon the information that they are gathering during the initial review. We would usually expect the next of kin to be informed about and involved in the review process, but each reviewer will use their discretion on a case-by-case basis.

What does legislation and guidance say about reviewers talking with families?

Section 11 of the Health and Social Care Act 2001 places a duty on NHS organisations to make arrangements to involve and consult patients and the public in:

  • Planning services that they are responsible for
  • Developing and considering proposals for changes in the way those services are provided
  • Decisions to be made that affect how those services operate

Therefore, at national, regional, commissioning and service provider level, service users and carers should be actively involved in planning, delivering and evaluating service provision. The overall aim of Section 11 was to increase patient-centred care and improve the experiences of service users and carers by ensuring they are involved at the beginning of any process to develop or change services.

NHS England’s ‘Commitment to Carers’ (published May 2014 and End of Year Progress Summary 2014/15, August 2015) notes that ‘Ultimately, we want to improve the quality of life for carers and the people for whom they care by supporting what carers have told us is important to them’ (p.5).

It also states the commitment to ‘gather bereaved carers views on the quality of care in the last three months of life in order to address gaps in evidence’ (Commitment 30).

What happens to the information collected from LeDeR reviews?

Once a review has been completed, the review report is partly anonymised. This means that we retain any information that could be important in instigating service improvements if necessary (e.g., the name of the person,) but delete any other information that could be used to identify the person who has died or those mentioned in the review (e.g., date of birth, names of family members contributing to the review). The partly anonymised review report is presented to the relevant ICS governance group whose role is to agree and take forward necessary changes to service provision, based on the findings of the review of death.

Each year our academic partner analyses the information from all of the reviews and produces the annual LeDeR report.