New resources on Epilepsy Risks and SUDEP

Source: IHAL, 21 October 2015

Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP). A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. It also found that in the majority of cases, no-one had talked to either patients or their carers about the risk of SUDEP and how that risk could be minimised.

To help address this issue, SUDEP Action have produced two leaflets to help raise awareness of epilepsy risks, aimed specifically at people with learning disabilities and their parents and carers.

These take the form of an Easy Read booklet and an accompanying companion guide for parents and carers, enabling them to go through the information with the person with epilepsy, providing additional information to suit their needs and ability. They have been developed with information provided by the Leicestershire Partnership Trust and approved by their Learning Disability Checkers Group.

These leaflets can be downloaded at or copies can be requested via