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, 21 May 2012

Cinders delivers, unlike current and past and future governments

Age-standardised disability-adjusted life year...
Age-standardised disability-adjusted life year (DALY) rates from Epilepsy by country (per 100,000 inhabitants). (Photo credit: Wikipedia)
A few weeks ago I asked my MP, or his family, to join me in my family's remembrances of our daughter one year on.  I thought that since his family had had a son whose death was epilepsy related he might pay some attention to one of his constituents in a fairly similar predicament.  Even more recently I asked my MP to help get through the Early Day Motion on Epilepsy, as previously blogged.  Sadly I didn't get satisfaction on either score.  Mr Cameron had other things on his mind.

Lest someone thinks I might be about to make a make a party-political point, my guess is that if my MP had been the PM of a different party then my guess is the result would have been the same. My point is that Epilepsy is a low-priority for governments of whatever persuasion. There are 400 deaths, or more per year from SUDEP now and there were the same number under previous governments.  Some money is beginning to trickle into research, but its not a flood.  And until significant money begins to pour in it is likely that 400 more deaths will occur this year - and the next and each subsequent year.

Now it is important to bear in mind these are largely deaths of young adults. Over 50% of SUDEP deaths occur before the age of 30.  So society has invested time and money educating these to become contributing members of society.  And just when they start their career in full - they die.  And possibly half of such deaths are considered avoidable.

Change will happen, but to do that it has to become a priority for society.  That's one reason why plays such as Seizing Cinderella are so important.  They help a wider audience to begin to think about the prejudices around Epilepsy.  This particular play even deals with that matter of death from SUDEP.

One day a government will pay significant attention.  Sadly it's not today.  I am not saying nothing is happening, but its changes at the margins.

Now where is that brick wall?

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