The Learning Disabilities Mortality Review (LeDeR) Programme was set up as a result of one of the key recommendations of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). CIPOLD reported that people with learning disabilities three times more likely to die from causes of death amenable to good quality healthcare than people in the general population.

The LeDeR Programme (2015-2018) is run by the University of Bristol and commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England.

It aims to make improvements in the quality of health and social care for people with learning disabilities, and to reduce premature deaths in this population.

 

What the LeDeR Programme will do:

There are two main Programme activities:  

  1. To support local reviews of deaths of people with learning disabilities throughout England.  
  2. To undertake a number of other related projects to help us find out how many people with learning disabilities die each year in England and why.

1. Support for local reviews of deaths of people with learning disabilities
The major role of the LeDeR Programme will be to support local areas in England to review the deaths of people with learning disabilities aged 4 – 75 at the time of their death. All deaths will be reviewed, regardless of the cause of death or place of death, in order to:

  • Identify potentially avoidable contributory factors to the deaths of people with learning disabilities.
  • Identify differences in health and social care delivery across England and ways of improving services to prevent early deaths of people with learning disabilities.
  • Develop plans of action to make any necessary changes to health and social care services for people with learning disabilities.

A piloting process for reviews will start in the NE and Cumbria from November 2015. Wessex and South Central areas are also interested in piloting the process. Reviews will then be rolled out across England once the learning from the pilot has been incorporated into the process.

         

The content of reviews

Initial reviews

For each death there will be an initial review. The purpose of this is to collect information to establish if there are any concerns relating to the care of the person who has died.  Also if any further learning could be gained from a more in-depth review of the death that would contribute to improving the health and social care provided to people with learning disabilities.

For the initial review we would hope that family members or other key people involved in the lives of the person who has died would be invited to contribute their views.  The reviewer would also collect limited case note information and complete a standard questionnaire.

In-depth or multiagency reviews

If there are any areas of concern identified about the death, or if it is felt that a fuller review could lead to improved practice, a more in-depth or multiagency review will take place.  This will involve the range of agencies that have been supporting the person who had died, (e.g. health and social care staff). The review will look at three levels of care:

  • Initial diagnosis and management of the condition.
  • Ongoing management of the condition from initial diagnosis to critical illness.
  • Management and care received during final illness.

Priority focus for the first year of the Programme

For the first year of the programme (2016) we will be looking in more depth at the deaths of young people aged 18-24, and all deaths of people from Black and Minority Ethnic Communities to learn if we can improve health and social care for these communities. All of these deaths will have multiagency review.

 

Involvement from local areas

The exact sequence of the roll out of the Learning Disabilities Mortality Review programme isn't yet confirmed but we would like to discuss the roll out in the North with you very soon. At that time we would be hoping to support the following:

1. linking in with an established group/helping to set up a new group to steer the Programme at local NHS England office level. The Steering Group would guide the implementation of the Programme at local NHS England office level and review issues and action plans arising as a result of local reviews of deaths.

2. identification of a regional contact (the 'region' here being the local NHS England office) to be the link between the Steering group and local reviewers. We estimate that the work of the regional contact will be approx 1 day a week. They will liaise with the LeDeR team to take notifications of deaths from their area, allocate reviews of deaths to local reviewers, support local reviewers as appropriate (along with the LeDeR team), and oversee all completed reviews of deaths to identify where actions need to be taken and what key messages are emerging. These should then feed back into the Steering Group.

3. identification of local reviewers. We will be asking for some local reviewers who will review deaths of people with learning disabilities in the local NHS England area. We estimate their work to take approx 1 day each week. Reviewers could be drawn from health or social care backgrounds and will be trained by the LeDeR programme. They will conduct initial reviews of all deaths of people with learning disabilities, and lead fuller multiagency reviews of those for whom this is indicated (we estimate approx 1 in 4 deaths). They will liaise with the regional contact and, during the set up phase, will be supported by the LedeR team


2. Other related projects  

We will be undertaking a number of other activities as part of the Programme:.

  • Working with Public Health England to link the data of people with learning disabilities on GP registers with information about deaths from the Office for National Statistics. This will tell us about the age and cause of death of people with learning disabilities in England.  
  • Looking at the provision of ‘reasonable adjustments’ for people with learning disabilities by service providers, and working with commissioners to include the requirement for the provision of reasonable adjustments in contracts.  
  • Improving death certification in relation to people with learning disabilities.

  • Establishing a repository of anonymised reports (e.g. Serious Case Review, Ombudsman or CQC inspection reports) relating to people with learning disabilities and summarising collective learning points and recommendations.

For further information:

Please contact Pauline Heslop, Programme Manager, LeDeR Programme

Email: Pauline.Heslop@bristol.ac.uk

Tel: 0117 3310973

Web: www.bristol.ac.uk/sps/leder