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

Friday, 25 May 2012

Charlie Burns in focus in UK parliament

Yesterday 24th, May, the issue of SUDEP came before the UK Government in context of one of those remembered in our panel on the left.  This is Charlie Burns, who died aged 10.  The case was raised by Claire Perry, MP for Devizes.  A key point raised was that paramedics who attended Charlie at the time made a diagnosis which was wrong.  They diagnosed febrile convulsion. Charlie recovered from that event but died days later in his sleep, classed as SUDEP, including a cerebral haemorrhage.

Like so many parents, like ourselves, they had never heard of SUDEP.    The call by Claire Perry was for a national register of SUDEP deaths.  However she also added that first responders should be trained better, implying that had Charlie been taken to hospital for an EEG then that might have helped save him.

To read the full text in Hansard click here.

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