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 5 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. They create campaigns and speak up about inequality.
They demand that their lives are valued as much as everyone else’s.
My Ordinary Life podcast – season 2
In 2024 the Stop People Dying Too Young Group worked with Flamingo Heights podcast producers to make season 2 of Inclusion North’s podcast.
The aim was to create resources that would help people become more comfortable and confident talking about death and dying. You can find out more about the podcast here
Here are some Easy Read guides to understand this topic better
- A guide to what the difficult words mean
- Stages of grief
- How you might feel if you are dying
- Making choices about the future
- The last few days
LeDeR Annual Reports
The group always responds to the national annual report about the LeDeR programme.
Read our response to the report that came out in 2023 here
Listen to the song that O’Hooley and Tidow wrote for us about how we felt about the 2023 report here
Watch the video of our 2022 response here
Watch a video of our 2021 response here
Watch a video of our 2020 response here
Watch a video of our 2019 response here
Making plans for the end of your life
In 2023 the group made a film about people having the right to make choices about the end of their life. You can watch the film here
Emergency Health Care Plans
In 2022 the group made a video about Emergency Health Care Plans. You can watch the video here
Values
The group came up with the values they want to see in the work to stop people dying too young in the North East and North Cumbria. You can watch the video here LeDeR Values
Inquests
In 2021, the group created resources to help people understand what a Coroner does and what an inquest is.
You can watch the Coroner video here
You can watch the Inquest video here
You can watch Dawn talking about her dad’s inquest here
You can see a BBC film about the work here
Poems
The group worked with Anthony from People Powered Press to write poems to remember people they loved who died too young. You can read their poems here
Easy Read resources
You can find all the group’s work in Easy Read at the side of the screen.
For more information about this work contact Karen Parry