SUDEP Action

Making every epilepsy death count
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SUDEP Action supports National Learning Disabilities Week 2015


This week is National Learning Disabilities Week – a week aimed at raising awareness of learning disabilities and changing the national perception of what it is like to live with a learning disability.  

Every day in this country, 3 people die from epilepsy. Of these around 1 in 3 is learning disabled. There are around 150,000 people in the UK who have both epilepsy and a learning disability. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of SUDEP.

A recent study in Leicester found that epilepsy is the second most common cause of death for learning disabled people. It was also found that in the majority of cases; no-one had talked to either patients or their carers about their risks (including SUDEP) and how their risks could be minimised. We know from a research project in Scotland, that when people with epilepsy are told about their risk of dying, around 1 in 3 changed their behaviour to reduce their risk.

Most people who have lost someone to epilepsy say they wish they had known more about the risks before the person died. The NICE and SIGN guidelines both advocate discussion of epilepsy risks (including SUDEP) with the patient at the earliest opportunity. However, a survey among UK neurologists showed that only 4.7% of them discussed SUDEP with all patients and 25.6% with the majority. The rest discussed the risk with very few or no patients.

This is why we are pleased to announce during this year’s National Learning Disabilities week, that in the coming months we will be releasing two new leaflets to help raise awareness of Epilepsy risks aimed at people with learning disabilities and their Parents and Carers. They will take the form of an Easy Read booklet and an accompanying companion guide for Parents and Carers which enables them to go through the information with the person with epilepsy, providing additional information to suit their needs and ability. 

If you would like to be kept informed in when these leaflets will be made available and would be interested in raising awareness of them in your area, please contact samantha.ashby@sudep.org