Reporting the death of a person with a learning disability or autistic person

Anyone can notify a death to LeDeR and the more deaths we are aware of the more accurate the information we have will be.

To report a death please use the online form on the LeDeR website.

Learning from lives and deaths – People with a learning disability and autistic people (LeDeR)

People with a learning disability often have poorer physical and mental health than other people and may face barriers to accessing health and care to keep them healthy. Too many people with a learning disability are dying earlier than they should, many from things which could have been treated or prevented.

The learning from deaths – people with a learning disability and autistic people (LeDeR) programme was set up as a service improvement programme to look at why people are dying and what we can do to change services locally and nationally to improve the health of people with a learning disability and reduce health inequalities. By finding out more about why people died we can understand what needs to be changed to make a difference to people’s lives.

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

On the 1 June 2021 a new LeDeR policy was launched LeDeR policy.  LeDeR will be the responsibility of Integrated Care Systems (ICSs).

  • Integrated Care Systems (ICSs) will need to make sure that:
    • LeDeR reviews are completed for their local area
    • there are fewer preventable deaths because people are getting the right care
    • all the organisations in the ICS learn from LeDeR to make services prevent people dying too soon
    • there is a stronger emphasis on the delivery of the actions coming out of the reviews and holding local systems to account for delivery, to ensure that there is evidence of service improvement locally

Click here for the LeDeR Annual Report

The South Yorkshire Integrated Care Board’s Learning from the Lives and Deaths of People with a learning disability and autistic people (LeDeR) Annual Report 2023/24. This report reflects the lives, experiences, and care of people with a learning disability and autistic people across our system.

This report is not only a statutory requirement - it is an opportunity for us to learn, reflect, and act. The themes and recommendations have emerged directly from real lives and real stories. They highlight where we have made progress, where we must do better, and most importantly, what actions we can all take - individually and collectively - to reduce health inequalities, improve safety, and deliver person-centred care.

I encourage you to read the report with a view to:

• Identifying learning relevant to your team or service

• Reflect on your role in driving improvements

• Discuss and share the report in your own networks

• Consider actions you can take forward locally