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New Scottish Epilepsy Guideline highlights risk


The new epilepsy guideline for Scotland has highlighted the importance of seizure control and reducing risk for people with epilepsy.  Jane Hanna OBE, SUDEP Action Chief Executive and Chris Jeans, SUDEP Action Ambassador attended the meeting to discuss the draft guideline in Scotland in January 2014.  The guideline has since been put out for consultation, which SUDEP Action is responding to.

The new guideline includes, for the first time, a dedicated section on epilepsy mortality which covers SUDEP and risk factors.  Chris Jeans, who lost her son Stephen McClelland to epilepsy in 2010, was pleased with the draft guideline, commenting: "Being a mother bereaved by epilepsy, it is very important to me to know what is happening in the diagnosis and treatment management of epilepsy." 

"Living in Edinburgh gave me the opportunity to attend the National Open Meeting to discuss the new draft guidelines which gave me a good understanding of the SIGN guidelines. I was most interested in the section regarding SUDEP and models of care and patient information.”

It was good to see a clear section in the guideline addressing measures to reduce risks. It was also interesting to hear about epilepsy in older people and women’s health.  The discussion sessions in each section were informative too.” 

SUDEP Action is now working on its response to the consultation on the draft guideline, and is campaigning to see the key recommendations from the Fatal Accident Inquiry into the tragic deaths of Erin Casey and Christina Fiorre Ilia implemented.  These recommendations call for greater clarity and communication between patients and their doctors, and for decisions not to tell patients about SUDEP to be reserved for extreme cases and explained in the patient’s medical notes.

Jane Hanna welcomed the improvements made to the guideline already, and the recognition that guidelines on risk are required, but acknowledged there is more to be done: “The risks of generalised tonic-clonic and nocturnal seizures were highlighted with the recommendation that risk should be discussed and that nocturnal supervision be considered.  

We urgently need more evidence but it is also clear that research has advanced enough in recent years to provide guidance on risk which is reliable and could save lives.  We now need to do all we can to ensure key recommendations from the 2011 Fatal Accident Inquiry are implemented, which will improve the guideline further.”