Tag Archives: SUDEP

Speak Up for Epilepsy – end avoidable deaths

EpilepsyJust having epilepsy takes as much as ten years off your life. People with epilepsy die young or younger – and 4 out of 10 deaths are avoidable. That’s the heartbreaking thing!

Epilepsy is all around us, but because its a hidden condition you do not notice it.

Statistically, there will be about 20 students with epilepsy at Farlingaye, 110 people in Woodbridge, 1250 in Suffolk Coastal, 7,300 in Suffolk…

Everybody knows someone – and all of you know me!

I’m asking our MP Therese Coffey to support a new National Sentinel survey from the DoH to record and audit all epilepsy deaths in the UK (as epilepsy deaths for starters – you wouldn’t believe how often they aren’t even recorded!)  and act on the findings – to ensure that in the future nobody with epilepsy will die needlessly & before their time.

I’ll tell you how I get on!

UPDATE:   19-03-2016

Yesterday I met my MP, Therese Coffey and persuaded her of  the need to commission an up-to-date National Audit of Epilepsy deaths and act upon it.  Dr Coffey, currently deputy-Leader of the House of Commons, has agreed to speak to the most appropriate minister, and hopefully arrange a meeting of MPs to talk to Jeremy Hunt. I know a lot of people over the country have already contacted their MPs.

If you think this is as important as I do,  you can email your MP  in this nationwide campaign (- even if its Dr Coffey again) .It will make this VITAL audit more likely to happen!Speak Up for Epilepsy – and help save lives please!

Seizing Cinderella: Raising the Curtain on Epilepsy

I’ve made a lot of fuss on these pages about the stigmatisation of epilepsy. Many people have it (1 in 30 will have a seizure at some time). You can develop it at any time in your life  for a variety of reasons (eg stroke, head injury, age, illness).  Few will mention it. Everyone ignores it. Society does not accommodate it.

It’s the elephant in the room, skeleton in the cupboard and all the rest of those cliches

Above all, epilepsy is not sexy. There are no brownie points to be gained by putting it on the stage, screen or page. While you’re having a seizure it’s hard to make you look look pale and interesting – frankly, sometimes it can be hard to make you look human. A seizure taps into folk-myths of transformations: werewolves, changelings, vampires. In short, a seizure looks scary, and it is hard for people to see beyond it: that underneath that (often) frightening transformation there is a person just like yourself but with a bum deal in the neuro-transmitter department.

No wonder that those with epilepsy do badly at school, are poorly served by health services, and find it hard to gain employment or form relationships.  They can be arrested in a street, turned off a bus or out of a pub – just for being ill.

And all these snubs have a huge impact on the life of the person with epilepsy

“You may only be put out of action for an hour every two weeks, but you’re always worrying, because you don’t know which hour it will be..”

Last Sunday, I went to Halesworth’s  Hightide festival to see a reading of Stephanie Street’s play Seizing Cinderella which tackles the issue head-on. Based on the true story of Ross (Brendan Coyle) it tell of the loss of his 26 year old daughter Karen (Louise Brealey) after years battling with the condition. It’s a double loss – first to the character-change that came with the merciless anti-epileptic medication, and then to SUDEP Sudden Unexplained Death in Epilepsy .

Ross doesn’t want this loss to happen to anyone else,  but discovers the biggest obstacle is ignorance, denial and stereotyping – and this results in deficient care. In the couple of years after Karen’s death, Ross learns more about epilepsy than in the 12 years she lived with it.

In counterpoint, the play also looks at the wonderful benefits an Epilepsy Support dog can bring to the life of a person with hard-to-control epilepsy – the 3 out of 10 whose seizures cannot be controlled by drugs.

The cast for the reading were excellent (see link for full details)  and supported this play fantastically. If I had a criticism, it was only that there was a facile link made between the poor public service response to epilepsy and the present government.

As if.

Amongst the shocking epilepsy statistics pointed out to – and ignored by – the last Labour government were: 400 avoidable deaths per year; 69,000 people living with unnecessary seizures; 74,000 people taking drugs they do not need; £189 million needlessly spent each year.  Nothing has got better since then, but it certainly hasn’t got any worse.  Those of us who cope with the appallingly deficient response of many services to epilepsy care across the board know only too well that it is not matter of current cuts, but long-term political lack of interest.

Let us hope that this play will break through some of the fear and prejudice behind this by reaching a wider audience. Everyone in this country needs to understand – and help change – what life is like for that 1 in 30.

After all, one day it could be you!