Frequently asked questions

Frequently asked questions about learning from deaths of people with a learning disability (LeDeR)

Anybody with a learning disability who dies, is over the age of four and lives in England can have a LeDeR review.

Every CCG has to complete LeDeR reviews for deaths that are notified from their area.

You can contact your nearest clinical commissioning group, which is listed under the region it is in.

Assuring transformation data is what we call some of the information we collect about people with a learning disability, autism or both who are getting care in hospitals for their mental health or because they have had behaviour that can challenge. You can find the latest information here.

Health and care of people with a learning disability is information which has been collected by GP practices to identify any differences in care and treatment of people with a learning disability compared to the rest of the population.

Information is collected about the progress of reviews in each clinical commissioning group (CCG) area.

This includes:

  • how many deaths the CCG have been told about
  • how many deaths are being reviewed at the time
  • how many reviews have been finished

A LeDeR review might not be started if the death of a person with a learning disability is subject to other investigations such as a police investigation, serious case review, safeguarding adult review, safeguarding adult enquiry, domestic homicide review, serious incident review, coroners’ investigation or child death review.

We know there is still work to do to make sure that the things we are learning can make a difference to people’s lives.  This includes:

  • Making sure that LeDeR reviews, and other investigations that are required by the law, are linked together when they need to be.
  • Collecting evidence from and sharing information with care services so that they can understand that caring for people with a learning disability and their families is everyone’s business.
  • Making sure that we know what health care services are changing and where so that we can tell if the LeDeR programme is helping people to live longer, heathier, happier lives.

We are committed to keeping the LeDeR programme going for at least the next four years.

We are working on lots of different areas of work which are all helping to improve people’s health so that people don’t die of something which could have been treated or prevented in the future.