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Confronting SUDEP
Epilepsy Society’s chief executive Graham Faulkner has backed a recommendation that people diagnosed with epilepsy should be warned of the risk of sudden unexpected death in epilepsy (SUDEP).
Scottish sheriff Alistair Duff made his recommendation after a fatal accident inquiry into the cases of two teenage girls, one from Fife and the other from Angus, who both had epilepsy and died in their sleep.
When people with epilepsy die suddenly and for no clear reason it is called sudden unexpected death in epilepsy (SUDEP). SUDEP is rare, about 600 people out of the 465,000 people in the UK with epilepsy die from it each year. However everyone with epilepsy should be aware of it so their individual risk can be reduced.
Fear of causing alarm
Erin Casey, 19, a St Andrews University student from Lundin Links, Fife, and Christina Ilia, 15, a school pupil from Forfar, were not warned that epilepsy posed them any risk because their doctors thought it would cause them unnecessary alarm. Erin died in October 2006 and Christina died in March 2009. Both girls died in bed following seizures.
Sheriff Alistair Duff found that if the girls and their parents had known about the dangers they might have taken precautions. He said the vast majority of patients with epilepsy, or their parents or carers, should be advised of the risk of SUDEP on first diagnosis or, if there are exceptional circumstances for delaying the information, then within a very short time. He also said that advice about the risk of SUDEP should only be withheld if there is a risk of serious harm to the patient in providing the information, or the patient has learning difficulties.
Sensitive approach
Graham Faulkner, chief executive of Epilepsy Society, said: ‘We recognise these recommendations as a major step forward in the management of epilepsy. Sudden unexpected death in epilepsy is a difficult and sometimes frightening subject to talk about, but receiving relevant and sensitive information from medical professionals at the time of diagnosis is important in helping people to manage their epilepsy and minimise the risks. Epilepsy Society is carrying out research into SUDEP to try and find out why it happens and how it can be prevented.’
Talking it through
Christine Brock, Epilepsy Society’s helpline manager, added: ‘We take calls daily from people who have recently been diagnosed with epilepsy. We understand the emotional impact and the increased anxieties around not only having a diagnosis but also coping with the risks involved in living with the condition.
‘We recognise the importance of discussing the possible risks for the person with epilepsy so that they can be given the support to enable them to minimise these risks. Individual risks may depend on the type and frequency of seizures and the underlying cause of epilepsy. There is often more than one factor which might contribute to the risk.’
Epilepsy Society’s confidential Helpline is open from Monday to Friday (10am-4pm) on 01494 601400.
You can read more about this story at Epilepsy Bereaved.
