"Neurologists are taught that the general public could not be trusted to understand complex medical matters." These are not my words but the words of Daniel Hoch, M.D., Ph.D., (see his article in Neurology Now). Fortunately Dr Hoch has seen the error of his ways, but perhaps others have not.
I always thought the main reason for reticence amongst "the doctorati"for avoiding ever raising the subject of SUDEP would be that they did not want to hurt people's feelings. The reasoning being that if someone has just found out they have epilepsy, then because that is a hard pill to swallow then giving them an even harder pill, that they might actually die from epilepsy is too much for them.
NICE guidelines, as I have previously blogged on, indicate that UK neurologists and doctors are strongly encouraged to inform patients and their families about any risk of SUDEP. However it is often the case that this advice is ignored. Perhaps postponed might be a better way to put it, "We'll tell them tomorrow..."
There is at least one incident of SUDEP that occurred within weeks if not days of first diagnosis of epilepsy. For that person, at least, tomorrow never came.
All I can say to doctors and neurologists is WAKE UP AND SMELL THE COFFEE.
All I can say to myself, as I pour a coffee, is why didn't I wake up myself. You stupid, stupid idiot.
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