Stop People Dying Too Young (the LeDeR programme)

A big part of our work is around preventing people with a learning disability dying too young.

This is known as the LeDeR programme. Research has shown that people with a learning disability can die up to 27 years earlier than other people – and often these early deaths can be prevented.

In the North East we facilitate the Stop People with a Learning Disability Dying Too Young Group.

This group is made up of self advocates and family carers, who have been working together for 3 years.

The group ask questions about why people die too young and think about what needs to change.

They make Easy Read resources  for people with a learning disability and their families and design training for professionals.

They create campaigns and speak up about inequality.

They demand that their lives are valued as much as everyone else’s.

The group want to know why less people with a learning disability have their deaths reported to a coroner than other people.

In 2021, the group worked with journalist George Julian to help people with a learning disability and their families understand what a Coroner does and what an inquest is.

The death of every person with a learning disability needs to matter if we are ever going to stop people dying too young.

Every death that should be reported to a coroner needs to be.

Our new resources include two Easy Read leaflets and two short videos.

You can find the Easy Read paper version of  What does a Coroner do and what is an inquest?  in the downloads.

Watch the video here 

You can find the Easy Read paper version of  Where is the justice? in the downloads.

Watch the video here 

The group are asking for Coroners, the Police, the Care Quality Commission, health and social care, human rights organisations, NHS England and their MP’s to take action to make sure that every death that should be reported to a coroner is.

You can see a video of one of our group Dawn talking about her dads inquest here 

You can see the video of the work we have been doing with George, and George tweeting at inquests on BBC News here

The Group have written an Easy Read response to the last two LeDeR Annual Reports and made videos to go with them.

There is a video of our 2020 response that you can watch here

You can find the Easy Read paper version in the downloads.

There is a video of our 2019 response that you can watch here 

You can find the Easy Read paper version in the downloads.

For more information about this work contact Karen Parry