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!
Well, who gave a damn? I attended the epilepsy debate in the Commons on Thursday, taking time off from a very busy working life (working remotely on the train), bearing the cost of travelling to London, sitting in the Visitors Gallery –all to watch 16 MPs talking – as if for the first time – about Epilepsy.
Can I repeat that, SIXTEEN MPs, out of the 650 elected (17 if you include the Deputy Speaker, the Speaker himself being otherwise engaged!) and paid for by us to represent us. But alas – the others must have been too busy and important to speak. We visitors wholly outnumbered those MPs in the chamber – the 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). There were no MPs from Suffolk at all! My MP Therese Coffey who cannot speak (because she is a Whip) did not take me up on the offer of a briefing neither did she brief anyone else to speak on behalf of her voiceless constituents. I have epilepsy, so does my daughter, and we can tell from personal experience over many years that the problems for people with epilepsy – regarding transport alone – are immense in a rural area such as Suffolk Coastal.
If we are going to adhere to the old-fashioned Parliamentary system, having an MP who is a Whip would seem a very good reason not to re-elect her next time round – why should we in Suffolk Coastal be deprived of representationin such a debate just because the parliamentary Conservative party needs party officers?
The larger picture is that clearly the majority of MPs don’t see support of epilepsy as any kind of vote winner – although 1% of people will suffer from a seizure sometime in their life and this will affect a lot of people beyond themselves.
Listening to the debate (and why on earth debate ‘Epilepsy’ rather than a sensible question regarding Epilepsy, anyway? Its like debating ‘Act of God’ or nailing jelly to the ceiling!) it seemed as if many of those speaking were hearing about the effects and problems of epilepsy for the first time. Others were using the debate to raise such individual examples as to be of very little use to the wider picture considering this was the first time this subject had ever been debated. It was more as it they were name-checking their constituents!
As one person concluded afterwards in an internet group I belong to: “Major issues ignored in the epilepsy debate, carers, (child and adult); modern indentured labour; Schooling; Multidisciplinary System neglect; Abuse and discrimination.. So many other things..” She is quite right!
And these speakers are the people we have been relying on to represent us. I was deeply depressed. You can read the debate here .
Epilepsy is and has been overlooked for years. So now that Laura Sandys – one of two MPs ever to admit to their epilepsy – has managed to secure a debate in the House of Commons, will it be to the bog-standard empty chamber? Will your MP be there? Write and ask them!
I sure as hell hope my MP, Therese Coffey, will be. And so, of course, I wrote to ask her. As follows:
You will not be surprised to find me writing to you to urge you to attend the forthcoming parliamentary debate on Epilepsy (26th February 2015; House of Commons; at 2pm)! The debate has been secured by your colleague Laura Sandys, one of two MPs, both in this parliament, ever to admit that they have epilepsy – even though epilepsy affects 1% of the UK population.
This resonates with me. There are thousands of county councillors across the country: however, I appear to be the only county councillor who is up-front about having epilepsy and thus prepared to support my constituents (and yours) with the fallout from this condition. Epilepsy has a profound impact on matters as varied as transport choice, education outcomes, career prospects, medication, life expectancy etc etc. Our failure to recognise epilepsy or these impacts has knock-on effects that can cause ripples throughout society.
One of these constituents is my daughter, failed over and over again by a country that is unprepared to allow her the chance to contribute and yet is deeply reluctant to support her by even educating or medicating her appropriately. This is a ridiculous waste of public money and human potential.
I have a number of issues to raise concerning the treatment and expectations of people with epilepsy in the UK in general and Suffolk in particular – with specific reference to our situation in Suffolk Coastal. However it would seem inappropriate to waste your time and mine unless I know whether you are going to be attending this debate. If you are (as I hope you are) I would be very happy to give you a briefing without prejudice or party-political bias on this very important issue
Today is the first day of National Epilepsy Awareness week. A good time to mention that yesterday an ex Farlingaye High School student – 19 year old Ben Greenhouse from Woodbridge – ran the Great Wall Marathon in China to raise awareness of epilepsy and funds for the charity Epilepsy Action.
He was the youngest runner to take part.
The Great Wall is one of the world’s most challenging marathons – not only 26 miles, but taking in 5,164 steep stone steps as well. The times are therefore much slower than those of road marathons that are run in towns.
“I had never run a marathon before, but I came 163rd out of 850 runners doing the full marathon, with a time of 5h37 mins” says Ben. “Thanks to the generosity of many friends in Suffolk I’ve already raised more than my initial target on £1000 for Epilepsy Action.
But today is the start of National Epilepsy Week and every £ is vital. Can you help me raise even more?
Epilepsy Action raises awareness of epilepsy and supports people who have it – people like my sister who needs to have someone with her all the time because she can’t be safe on her own.”
For the last six months Farlingaye High School student Ben has been enrolled at the Qufu Shaolin Kung fu school, learning traditional Chinese martial arts. “The training was quite intense. They worked us hard for hours every day, and we often had to run 1000 stone steps up the nearby mountain. And then another 1,000 down again afterwards. It was very different from Woodbridge – but good training for the marathon,” says Ben.
“1% of the population – 1 person in every hundred – has epilepsy. There must be 70 or so people with epilepsy in Woodbridge alone. It’s a life-changing condition – but with your help it doesn’t have to be life-diminishing!”