Change that leads to better lives

Making reasonable adjustments to epilepsy services for people with learning disabilities

This report is the eighth in a series of reports looking at reasonable adjustments in a specific service area. The aim of this report is to share information, ideas and good practice in relation to the provision of reasonable adjustments.

Recent studies looking at the proportion of people with learning disabilities who have epilepsy show a range of rates. This is because these studies used different definitions of epilepsy and took different approaches. However, roughly one out of every five people with learning disabilities also has epilepsy. This is much more common than for other people. In the general population only one person in 100 has epilepsy. This means that a large proportion of people with epilepsy also have learning disabilities. The recent Confidential Inquiry into premature deaths of people with learning disabilities found that epilepsy was the most common long-term condition for the cohort of people with learning disabilities – 43% of them had been diagnosed with epilepsy.

Epilepsy and convulsions have been identified as a common, possibly preventable, cause of death for people with learning disabilities. There is evidence that epilepsy is associated with increased mortality in people with learning disabilities even taking into account their higher rates of epilepsy. Studies show that people with learning disabilities are at a higher risk of sudden unexpected death in epilepsy (SUDEP). A small study found SUDEP was the second most common cause of death among adults with epilepsy and learning disabilities.

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