Category Archives: epilepsy

epilepsy, Epilepsy in Suffolk, Health, Your councillor

Epilepsy debate: House of Commons 26 Feb 2015 – 2pm

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Caroline Page
Caroline Page, County Councillor for Woodbridge. Suffolk 

Update 26-02-15:

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 .

 

Original post

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:

Dear Therese,

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

Best wishes

Caroline

epilepsy

Woodbridge student ‘hits the Wall’ for Epilepsy Awareness

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Part of the marathon route

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?

Ben afterGreat Wall
Woodbridge’s Ben Greenhouse (right) the youngest person to run the 2014 Great Wall marathon

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!”

You can sponsor Ben via his Justgiving page http://www.justgiving.com/Ben-Greenhouse

(Caroline Page: I have to declare two personal interests here: firstly, I am myself one of the 1% who have epilepsy.  Secondly, Ben is my son. I am justly proud of him)

Carers, epilepsy, Expenses, Your councillor

Expenses – and why I don’t claim them

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I have just been asked why I have claimed no expenses since my re-election in May. “A recent FOIA request by Ipswich Spy has produced the expenses claims put in by the 75 County Councillors since the election at a staggering £25,000…  Four councillors have claimed more than £1,000 and several councillors have claimed none at all. ” Well,  I’m one of those who have claimed nothing.

In fact, as your County Councillor,  I don’t think I have claimed any expenses  whatsoever for the last three years.

It’s been a (rather small-scale) point of principle.

Lets not get this out of proportion. You’ll be pleased to know that there isn’t a great deal that a county councillor CAN claim for at the best of times  – and this is as it should be.

But I have not claimed for travel on council business – even when Tory cuts mean that there are no longer buses running to get me home; I have not claimed for meals or coffee to sustain me on the days when I leave home at 7 and don’t get back till late;  the wreaths I lay  to celebrate Woodbridge’s war dead have been paid for out of my own pocket – and on the odd occasion work has taken me to London I’ve stayed with friends rather than cost the hard-pressed council-tax payer of Suffolk a single penny.

I am a carer for someone who often cannot be left safely, but  even here I have used a patchwork of friends and favours to provide the required care. (Staff at Suffolk CC’s Endeavour House have been wonderfully supportive  on a couple of occasions when I’ve had real emergencies.)

Please note –  I don’t want to sound self-righteous, I’ve been making a point. I want to show up the contrast  between what is possible and what some others think it appropriate to claim for – legitimately – at a time of fiscal belt-tightening. There are councillors who have duties that require a lot of transport and it seems only fair that it is funded. But if they could only claim for using public transport maybe Suffolk would have better public transport?

(It is also very important that the business of being a local councillor is not restricted to those who can afford it. We need more participation from people of all ages and backgrounds if we want to deliver real democracy in decision-making. But maybe this is more about what the average councillor’s  allowance is, than how much they can claim in expenses.)

Now I think  being a full-time carer as well as a full-time county councillor makes me a better full-time county councillor – just as I think that being a county councillor who travels by public transport and bicycle will have a better understanding of the problems of rural transport than one who travels by car with expenses-funded petrol. My caring duties are not diminishing.  In the future  I may have to claim for emergency care cover as and when I need it.  And, as I have  mild epilepsy, transport can be very difficult when there are no buses and I  am not well enough to cycle.  But until there is a real need, I won’t be claiming.

I suspect if there were more in my position representing you, some significant and important council decisions might have been/would be different – and the outcomes for the people of  Suffolk  better.

If you have strong feelings on this matter – please contact me now -either by commenting below or by email/twitter etc