Be Epilepsy Aware Project

What is the project?

As part of our ongoing mission to help create a world without limits for people with epilepsy, Epilepsy Action are collaborating with the North East and North Cumbria Learning Disability Network to design and develop the ‘Be Epilepsy Aware’ self-management training course. This course is being co-produced and delivered by people with epilepsy and a learning disability using a train-the-trainer model.

In creating this course, we are aiming to provide accessible epilepsy awareness education, which will, in turn, empower people with a learning disability to live well with epilepsy. To make the course as accessible as possible, it is being designed using a hybrid delivery model, so it can be taught either online or face to face.

We will be piloting the course in North East and Cumbria, and it will be hosted on the Epilepsy Action online learning platform and the Northeast and Cumbria Learning Disability website.

Why is this work being carried out?

• People with a learning disability face significant health inequalities compared to the general population. As outlined in the 2021 ‘Learning Disability Mortality Review’ report, people with a learning disability are dying on average 22 years earlier than the general population.
• 49% of deaths were rated as “avoidable” for people with a learning disability. This compares to 22% for the general population. The average number of long-term health conditions per person was 2.45 (standard deviation = 1.56). Epilepsy was the most common long-term health condition associated with an earlier age at death.
• Research suggests that epilepsy is much more common in adults with a learning disability than those without a learning disability, and is more common amongst men and those with a higher level of impairment (McGrother et al. 2006; Epilepsy Society, 2019 ; Robertson et al., 2015).
• In 2018-19, epilepsy was 26 times more common in people with learning disabilities than would be expected for an equivalent cohort of the general population (NHS Digital 2020), thus highlighting the need for accessible education.