Edinburgh, Fife & East Scotland

Epilepsy patients 'should be warned of death risk'

Everyone with epilepsy should be warned of the risk of sudden death due to their condition, according to a sheriff.

The call follows a fatal accident inquiry into the cases of two teenagers, one from Fife and the other from Angus, who died in their sleep.

Epilepsy is the most common neurological condition in the UK, with nearly 500,000 people diagnosed.

There is risk people with epilepsy can die unexpectedly during their sleep.

The risk is broadly estimated to be one in a thousand, but it depends on the severity of the epilepsy.

Not sleeping alone

Erin Casey, 19, a St Andrews University student from Lundin Links, Fife, and Christina Ilia, 15, a school pupil from Forfar, were not warned of this risk because their doctors thought it would cause them unnecessary alarm.

Ms Casey died in October 2006 and Ms Ilia died in March 2009. They both died in bed after suffering seizures.

Image caption Erin Casey was a St Andrews University student who died in October 2006

The fatal accident inquiry was held between November 2010 and March 2011.

Sheriff Alistair Duff found that if the girls and their parents had known about the dangers they might have taken precautions, such as not sleeping alone.

He said: "The vast majority of patients with epilepsy, or their parents or carers, should be advised of the risk of Sudden Unexpected Death in Epilepsy (Sudep) on first diagnosis of it or, if there are exceptional circumstances for delaying immediate provision of the information, then within a very short time thereafter.

"Advice about the risk of Sudep should only be withheld if there is assessed to be, in the case of a particular patient, a risk of serious harm to the patient in providing the information, or the patient has learning difficulties."

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