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

Wednesday, 18 April 2012

Lobby your MP about epilepsy before 27th April

I have just reported how Epilepsy research is very poorly funded.  Whether you are interested in SUDEP or Epilepsy in general now is the time to lobby your MP on the issue.  Coming up just nine days on the 27th April is the UK Government's second hearing of Valerie Vaz's 10-minute rule hearing on Epilepsy.  Full instructions and details can be found on this page on the Joint Epilepsy Council's website.


If I can just put this in context of Jane, both the National Institute for Health and Clinical Excellence (NICE) and the Department of Health accept that the level of misdiagnosis is 20-31% so tens of thousands of people are taking drugs that won’t help their seizure.

Could Jane actually have been taking drugs that were no longer appropriate for her condition?  Might she have died because a lack of something like an annual review that might have helped ensure that she had the best AEDs with an appropriate dosage. 
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1 comment:

  1. Nice work, I am really glad to be 1 of several visitants on this awful site : D

    ReplyDelete

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