Stop People Dying Too Young (the LeDeR programme)
A big part of our work is around preventing people with a learning disability and autistic people 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 Dying Too Young Group.
This group is made up of self-advocates and family carers, who have been working together for 4 years.
The group ask questions about why people with a learning disability and autistic people are at risk of dying much younger than other people and think about what needs to change.
They create campaigns and speak up about inequality.
They demand that their lives are valued as much as everyone else’s.
The group always responds to the national annual report about the Leder programme. The annual reports show what has been learnt from the death of people.
Watch a video of our 2021 response here
Watch a video of our 2020 response here
Watch a video of our 2019 response here
You can find all the Easy Read versions in the downloads at the side of the screen.
The group worked with Anthony from People Powered Press to write poems to remember people they loved who died to young. You can read their poems here
In 2022 the group worked with colleagues in the NHS to create information to make it easier to plan for the future. They made a video about Emergency Health Care Plans. You can see the video here
You can find the Easy Read version in the downloads at the side of the screen.
In 2021, the group worked with journalist George Julian to create resources to help people with a learning disability and their families understand what a Coroner does and what an inquest is.
Our new resources are called:
- What does a Coroner do?
- What is an inquest?
You can watch the Coroner video here
You can watch the Inquest video here
You can find the Easy Read versions in the downloads at the side of the screen.
You can see a video of Dawn talking about her dad’s inquest here
You can see the video of the work we have been doing with George Julian on BBC News here
For more information about this work contact Karen Parry