Improving health

NHS England continues regional roll out of a Learning Disabilities Mortality Review (LeDeR) Programme.

NHS England is committed to ensuring that people with learning disabilities receive the right care in the right settings, with the right support.  This is one of our national priorities. We know that we urgently need to understand and reduce health inequalities amongst this group, which is why, as part of our programme of work we have commissioned the Learning Disabilities Mortality Review (LeDeR) Programme.

The LeDeR programme is the first of its kind in the world and is managed by the Norah Fry Research Centre at the University of Bristol, under contract to the Healthcare Quality Improvement Partnership (HQIP). Funding is provided by NHS England for an initial three year period to June 2018.

Aims

People with learning disabilities are four times as likely to die of preventable causes compared with the general population (Disability Rights Commission, 2006). Following the Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD, 2013) one of the key recommendations was the establishment of a national learning disability mortality review  to understand the circumstances leading to a death and whether such deaths could potentially be avoided in the future through improvements to health and care services.

The LeDeR programme was subsequently established and its key aims are to:

  • Help reduce premature mortality and health inequalities for people with learning disabilities in England through local reviews of deaths of people with learning disabilities.
  • Effect change and make a difference to the lives of people with learning disabilities and their families.
  • Ensure that reviews of deaths lead to reflective learning which will result in the improved delivery of health and social care services.
  • Ensure the process of reviewing the deaths of people with learning disabilities becomes embedded into local practice across the country.

Following a successful pilot in the North East of England, a staged roll-out of the LeDeR programme is taking place with the aim for this to be embedded across the country by the end of 2017.

In December 2016 the CQC published ‘Learning, candour and accountability’ which reported how acute, community and mental health NHS trusts investigate and learn from the deaths of all people who have been in their care.  As a result the Learning from Deaths programme has been established, led by NHS Improvement and the CQC.  The LeDeR programme is working alongside this to ensure that the deaths of people with learning disabilities are identified and that cross-agency mortality reviews are standardised to improve the delivery of health and social care services.

Further details and supporting information on how the programme is being rolled out can be found below.

How you can help

There are two key ways health and social care employees could be involved in the programme::

  1. One is with regard to notifying the death of a person with learning disabilities, aged 4 years and over
  2. The other is to input into a review into the circumstances leading to the death, of a person with learning disabilities. This may involve sharing information about a patient who has died or participating in a multi-agency review where knowledge from a range of perspectives will be of significant importance.

The following documents will provide further information:

Important information for families and friends

The LeDeR programme has been set up to improve the quality of health and social care for people with learning disabilities. It greatly values the contribution of families of people with learning disabilities to all aspects of the work. The following documents will provide further information on how families and friends can contribute to the programme.

When can I report the death of someone with learning disabilities to the LeDeR programme?

Some areas are not quite ready to review all deaths, so see the detailed roll out plan for more information about this.

To summarise:

NHS England North region

All deaths of people with learning disabilities are being reviewed in:

  • Yorkshire and the Humber
  • Lancashire
  • Cumbria and North East
  • Cheshire and Merseyside/Wirral
  • Greater Manchester

NHS England South region

All deaths of people with learning disabilities are being reviewed in:

  • Wessex
  • Oxford

NHS England Midlands and East region

All deaths of people with learning disabilities are being reviewed in:

  • Leicestershire, Leicester City or Rutland
  • Derbyshire
  • Hertfordshire
  • Norfolk

NHS England London region

All deaths of people with learning disabilities are being reviewed from 1 May 2017.

Latest updates/news

As the LeDeR programme is rolled out across the regions, additional updates will be provided here. Please continue to look at this website for further information.

For FAQs and further information about the programme, please contact the LeDeR Team

Email: leder-team@bristol.ac.uk | Telephone: 0117 331 0686 | Website: www.bristol.ac.uk/sps/leder