Patients not told of epilepsy sleep death risk

A fatal accident inquiry in Dundee by Sheriff Alastair Duff, said there was a chance Erin Casey, aged 19, of Fife, and Christina Ilia, 15, of Forfor, might still be alive if they had known about Sudden Unexpected Deaths in people with Epilepsy (Sudep).

Neither Erin nor Christina’s families, nor the girls themselves, were told about Sudep at any of their hospital appointments. Nor were they told that while nobody knows what causes it, there could be ways of reducing the risk: taking medication properly, getting enough sleep, not drinking too much, amongst other things.

• About 500,000 people in the UK have some form of epilepsy
• In the UK 1,200 people die from every year or 3 per day
• About 50 per cent of those are thought to be from SUDEP

And this is the cause of dreadful pain for these two families. The Caseys from Fife and Christina’s parents Lynne and Markos from Forfar, say the chance to prevent the deaths of their daughters was taken out of their hands. Erin died in her bedroom at St Andrew’s University in October 2006 and Christina died at her home in March 2009.

‘No benefit’ telling families risks

During the hearings both girls’ consultants, one from Ninewells Hospital in Dundee and the other from Victoria Hospital in Kirkaldy, said that they had taken the decision that the risks were so small that there was no benefit to giving them or their families this information. In Erin’s case, her consultant said her epilepsy was nothing more than a nuisance and that she should just get on and enjoy life. Six months later she died.

For Erin, it is clear now that she was not taking her epilepsy medication. There is a suspicion she was worried about putting on weight, that it was interacting badly with her contraceptive pill. She was in her first six weeks at St Andrew’s University and was having a good time which inevitably meant drinking alcohol.

Her mother Janet said that if Erin had understood that there were risks associated with not taking the epilepsy drugs properly, if she had understood that it was important to get enough sleep and not to drink too much, then she would have been able to make an informed choice.

“She may not have chosen to do this but at least she would have had that information,” Mrs Casey said.

Anger does not even cut it. Everybody we discuss this with cannot understand that we have been denied this information. Lynne Wheeler

Lynne Wheeler, Christina’s mother, told Channel 4 News, that they simply did not understand that epilepsy could kill. It was only the day after her daughter had died, when she was searching on the internet that she came across information about sudden unexpected death.

“Anger does not even cut it,” Ms Wheeler said. “Everybody we discuss this with cannot understand that we have been denied this information.”

Six-hundred Sudep deaths annually

The National Institute for Health and Clinical Excellence (Nice), says in its guidelines that patients should be informed. But Jane Hanna, of the charity Epilepsy Bereaved, said that doctors are ignoring these guidelines.

Ms Hanna said the report will have widespread implications for health professionals across the UK.

About 500,000 people in the UK have epilepsy and 1,200 die every year. It is thought about half those deaths are associated with Sudep.

What is so hard for Christina’s parents Lynne and Markos is that during the inquiry they learned that the health board had from 2008 decided to give out leaflets to all new patients in which they discuss Sudep. But they did not give it to patients diagnosed before this date. They are angry that the Dundee Sheriff report has not highlighted this issue.

Simon Shorvon, professor of neurology at University College London, recently published a review in the journal the Lancet, in which he said that “in general” doctors should discuss Sudep with their patients. He said the only exceptions might be when a patient is mentally incapacitated.