SUDEP Action

Making every epilepsy death count
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My Life with Epilepsy


My Life with Epilepsy is a project led by SUDEP Action, working with Speakup, Cornwall Partnership NHS Foundation Trust, University of Plymouth's Penninsula School of Medicine, and University of Sheffield’s School of Education. We will be improving and developing information and resources to help people with a learning disability and autistic people to better understand and reduce their epilepsy risks.

This project has been made possible thanks to a grant from NHS England.

The name for this project came from Speakup's experts by experience. It reminds us that people with a learning disability/autism who also have epilepsy (& their parents/carers) should be fully involved in their epilepsy care & risk management conversations - which is why the 'My' is circled on the image above. The name also shows that it is important their epilepsy (& it's risks) is not forgotten about, and is looked at alongside any other care or health support they may need. 

What will the project do?

  • The project will refresh and improve SUDEP Action’s existing leaflets for people with a learning disability and autistic people (and parents/carers). We will also create videos on epilepsy risks for these groups.

  • We will work with Speakup to make sure people with a learning disability & autistic people at the heart of the project. Their experts by experience will help us make sure the information and resources we create are useful and impactful.

  • We will then test the leaflets & videos in a local area – to show that providing this important information helps people with a learning disability, autistic people & their parents/carers to understand & take steps to reduce their epilepsy risks. This can help improve their seizure control, overall wellbeing and reduce their risk of SUDEP (Sudden Unexpected Death in Epilepsy) / dying prematurely.

  • Speakup’s experts by experience will help us review the EpSMon app – so we can make the app better in future (we hope to create a new version soon, once additional funding has been secured).

Why this project is happening now:
We know there are at least 21 epilepsy deaths each week in the UK, and at least 42% of these are known to be potentially avoidable. 22% of people with a learning disability, and 12% of autistic people live with epilepsy. For many, their epilepsy may be difficult to control using medication, and they may be at higher risk of SUDEP/dying early.

The 2020 LeDeR report (Learning Disabilities Mortality Review) into deaths in people with a learning disability showed that epilepsy was the sixth most frequently recorded cause of death in 2019 and 2018,  and it was also the second most frequently reported potentially treatable cause of death. The LeDeR report recommended that people with epilepsy and a learning disability have at least an annual epilepsy review (& up to date care plan), as well as improved training (for them and their carers) around issues such as emergency/rescue medications.

It also highlighted SUDEP Action’s SUDEP and Seizure Safety Checklist (for clinicians) and EpSMon app (for people with epilepsy) as existing resources already available as a safety measure for use with people with a learning disability. 

A 2021 report into the death of Clive Treacey, who had epilepsy and a learning disability, also recommended these tools be used to better manage and communicate risk with this group.

Who are the Project Team?

Other leading experts on epilepsy and learning disability will also be involved throughout the project.


Thank you to the SUDEP Action supporters who are supporting this project by sharing their loved one's story with us. Click on the photos below to read their stories:
                                             Ben                                     Jenny                                    Clive
                         Karen                                Richard                              Georgie                             Stephen

Your stories help us to make a real difference. Please share your story with us to help us to help others during this project. We need stories about:

  • People with a learning disability or autistic people with epilepsy who have died due to their epilepsy/SUDEP
  • People living with epilepsy and a learning disability/autism
  • People who support those living with epilepsy and a learning disability/autism (eg: family members, carers and health professionals)

Please get in contact via [email protected] and we can help you share your story.


For information on epilepsy risks and how to reduce them:
Download the free, award-winning EpSMon app:
Access the free, award-winning clinical SUDEP & Seizure Safety Checklist:

If you have been bereaved by epilepsy/SUDEP: and