Just 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!
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!
Its National Epilepsy Week this week. There are thousands of people with epilepsy in Suffolk (I am one) and the effects of this condition are felt by a much wider circle: their relatives, carers, friends, employers. Yet our lawmakers remain uninterested.
The first ever Epilepsy debate in parliament in February which I attended – see my disenchanted comments here – attracted 5 Tory MPs out of 302 (1 in 60); 7 Labour MPs out of 256 (1 in 36.5) and 4 LibDem MPs out of 56 (1 in 14).
Lets try and encourage this intake to be more interested.
Write you your MP today and tell her what it is like, and how it impacts upon your life – and the cost to you, your family and Suffolk services of not having a joined-up response. Details via Epilepsy Society page.
On 26th February I joined with five colleagues from the Suffolk Poetry Society in a ‘Stanza Bonanza’ – when two teams of poets from different areas join with each other in a sort of friendly contest.
It was held at the Poetry Society’s Poetry Cafe in Covent Garden. We were matched against some excellent poets from Swindon, Wiltshire.
I read one poem inspired by a fungus foraging afternoon organised by Suffolk Wildlife Trust at Knettishall Heath, last year, and also – because I had spent the afternoon at the House of Commons’ first EVER debate on Epilepsy – a poem I’d written on Temporal Lobe Epilepsy, “Lament for a Late Ghost“.
Why not be topical.
I may also be reading this at Woodbridge Library for their next poetry evening, 26 March as will be Purple Day 2015 – Epilepsy Day!