Our daughter Jane died from SUDEP & possibly from ours and her ignorance. Nearly half of all SUDEP deaths are avoidable. Stay Alive - Read On.

Monday, 19 March 2012

Hard Choices? Expletive deleted

When is the right moment to tell someone the might die from SUDEP?  Our Jane, like many people living with epilepsy was never told.  We, as parents were never told.  If you read the stories of parents, siblings, grandparents, frields and whoever, then historically no-one was told.

Not telling was, and where it still exists a conspiracy of silence that will condemn people to death where knowledge and awareness MAY have avoided such a death.  Silence is no longer an option.

So when do you tell someone about the risk of death in SUDEP circumstances to them?  Some argue for a softly-softly approach, by which we mean that awareness of the risks of SUDEP should be told some time after initial diagnosis.

My answer is that approach is wrong, so totally wrong.  Someone could go away from a diagnosis and die the next day.  What use would follow-up advice be to them?  Also if the advice is given later then I do not think the severity and importance of the advice will sink it.  Such belated advice will simply wash over them with thoughts such as, "if it wasn't important to be when I was diagnosed, then it probably only refers to other people with epilepsy."

I would also argue that everyone who already has epilepsy should be told, most definitely at the next review with a doctor.  Oh, and that appointment should be forced to happen withing the next year.

Yes, it is a hard choice to tell someone they could be at risk of SUDEP.  If someone has had a relatively healthy lifestyle and then is confronted with a future with epilepsy then they have a lot to digest.

But digesting the wrong message is simply wrong.  It means they have to suffer yet another mental shock.  The Pscychiatric Times reports that the UK's NICE (National Institute for Clinical Excellence) is recommending a study to tell some patients immediately and tell others months later.  This is allas part of a trial to try to find whether informing patients now or later is better.

I wonder if the trial also includes asking if telling people later actually gets the message home as effectively!

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