Tag Archives: epilepsy

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!

National Epilepsy Week – write to our MP, tell her what it’s like!

People with epilepsy  are quite as capable as anybody else!
People with epilepsy are quite as capable as anybody else!

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).

Shameful.

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.

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

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

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)

Epilepsy: Education, Employment – and Discrimination

To celebrate having been shortlisted for a Young Epilepsy Gold Champions award, I’m taking the opportunity to post a shortened form of the lecture I gave to a Suffolk Youth, Disability and Employment forum last year

 

Epilepsy is the world’s most common serious neurological disease -1 in 3 of us will have a single seizure sometime in our lives and for 1% of us this develops into epilepsy.  It’s not generally a biggie – most people with epilepsy  have no seizures at all because their condition is controlled by medication.

Although there are plenty of other hidden disabilities which unfairly affect employment  – in people who look ‘normal’ on the outside, who will make as good an employee as anybody else, but whose condition can cause reservations in the way people think of them and think of employing them – the impact of epilepsy on employment is particularly gross

Who gets epilepsy?

Anyone can develop epilepsy:   all ages, races and social classes. It occurs because it is familial, because of injury or illness, because of a stroke. And as there are over 40 types of epilepsy,  just knowing that a person ‘has epilepsy’ does not tell you very much about the type of seizures they may have and what they can or  cannot do.  Yet many – most – people with epilepsy are anxious to keep it secret because they fear stigmatisation, ostracism and discrimination.

And rightly, because people who are known to have epilepsy are so very frequently stigmatised, ostracised and discriminated against!

Of course, the thing about a hidden disability is that it IS hidden,  so that no-one need know of it unless it shows in some way – in epilepsy, the occasional public, embarrassing seizure in the street.  With the 70% of people who are controlled, you would not recognise them as having epilepsy  – in fact we’ll all know people who have it, but we don’t know that they have it.

So its Catch 22 – people are only faced with examples of epilepsy where its uncontrolled and overt, and publicly recognisable – the scary negative images you see secondhand rather than linking it to the ordinary person they know.

In fact since the death of that famous epileptic Julius Caesar  its hard to think of many public heroes, hard workers or divergent thinkers as role models for epilepsy. Or  even antiheroes, dossers and poor thinkers. There will always have been  at least 6 epileptic MPs in Parliament. Yet it was only finally in this current parliament that two MPs: Laura Sandys and Paul Maynard – were open about having it!

It is as if people think epilepsy were rabies – or syphilis – or smallpox.

Well, it isn’t.

Epilepsy treatment in Suffolk

Suffolk has no specialist epilepsy care within the county. You can’t get private health  insurance for epilepsy and so it  isn’t a popular neurological specialty.  (Cynical? Not me!)

As a direct result of this, simple changes and ‘tweaks’ to medication (simple but  vital – they could make the difference between a person functioning and non-functioning in society) historically took ages and gaining control took needless years. Years in which everyone became prey to lower and lower expectations, anticipating social care ‘solutions’ rather than recognizing that epilepsy is a temporary health problem for a person capable of leading a full and fulfilling working life.

Hurrah for GP commissioning – as long as you have a good GP.  It used to take decades for a tertiary referral from often defensive, arrogant ‘nothing can be done, don’t bother me’ consultants. It is now recognised that tertiary assessment needs to be done as soon as possible if someone with epilepsy is going to live – and work – as others do!

Latest NICE guidelines are here. Let’s do all we can to ensure they are adhered to, shall we?

Epilepsy and education

Limited expectations  of people with epilepsy impact equally strongly on education.  Shockingly, HALF of all students with epilepsy fail to reach the academic level predicted by their IQ, with effects that can be life-long. This is because a good educational outcome for  students with epilepsy is not just about medical care and risk assessment, but also ensuring that schools and teachers manage the impact that both the condition and the medication has on learning.

Its not a big ask but we’ve not got there in Suffolk. Those of us with personal experience know that low academic achievement among Suffolk students with epilepsy is put down to the failure of that student, rather than the failure of the Suffolk school system to educate. And very convenient it is for the Suffolk educational system to think so!

Last year, after a lot of  pressure from myself, Young Epilepsy’s School Epilepsy champions  scheme finally reached its first school in Suffolk. It’s a start – but we need so much more. The scheme needs to be rolled out – and taken seriously (no lipservice please, SENCOs) – countrywide.

Because (again I speak directly to SENCOs) it is not enough to call students with such hidden disabilities  ‘special,’ and pat them on the head, and give them gold stars, and tell them they have completed ‘challenges’  which did not challenge them – if it fails to prepare them adequately for a world of work. It is certainly not enough for educators to wave such young people out of the educational door at the other end of a life of gold stars and unchallenging challenges without taking any care or responsibility for what they have been offered and whether it was fit for purpose!

Here employers must help: they have no qualms in telling schools where they have failed in educating  ‘normal’ school-leavers. Couldn’t they do the same favour to those with epilepsy?

Remember, if school leavers with hidden disabilities can overcome these hurdles it doesn’t make them ‘as good’ as non-disabled employees – it  actually makes them better –  Paralympians to the workplace’s common-or-garden Olympians. Dealing daily with an unsympathetic able-bodied world  gives such people the potential to be not only more determined and more competent,  but more resourceful, more resilient, more capable of dealing with failure and finding other ways round a problem.

Its very much like swimmers train to become stronger with lead weights strapped to wrists and ankles. In the sports world it’s called progressive overload.

 Young people with disabilities have potential to go further and faster than others. What a shame the educational system has the tendency to patronise this potential out of them!

Epilepsy and  employment

And of course this patronising attitude doesn’t improve the job prospects of a youngster with a hidden disability. Instead it goes to prove – to employers, along with the school, the doctor, the young person and their family ( in fact the rest of the world)  that people with conditions such as epilepsy are simply not up to the job.

At the end of the day, its not just the health, and the education system that has an impact on work. Low employment is also failure of the workplace.

While some good employers accommodate epilepsy and similar conditions– and let’s remember:

  • 70% of people with epilepsy are wholly controlled by medication
  • epilepsy is a disability and people who have it should not be discriminated against
  • a diagnosis of epilepsy per se has no impact on intellectual attainment or innate capacity

it is surprising how frequently epilepsy is linked with joblessness.  Indeed, when my daughter was due to have statutory work experience at school  no workplace at ALL could be persuaded to offer her a placement– with the noble and notable exception of the Ipswich Hospital Education Service. (Thank you, wonderful Ruth Pickover)

Don’t let me get started here on all those young people with an over-developed sense of entitlement who are supported to feel that being an ‘unpaid intern’ is a breach of their human rights. Many disabled youngsters would give their eye-teeth for such chances. In fact the last time I went to a convention for employment and the disabled,  we were told that paid work was hard, almost impossible,  to achieve – and unpaid work of any sort was recommended as a goal.

Tell me, are disabled youngsters worthy of less human rights than the mainstream?

For how can anyone learn to support themselves unless they are ‘allowed’ to work? The Intolerant Press (you know who I mean) talk endlessly about the ‘work-shy’. For people with epilepsy it’s much more a case of employers being ‘worker-shy’

Epilepsy, employment and discrimination

So with a hidden disability what should you do? You are legally obliged to declare it, employers are legally obliged not to take it into account. All’s fine and dandy.

Right.

Does it really work that way?

I know a young woman with bad epilepsy. She has one or two tonic-clonic seizures a week – almost all outside working hours. She is personable, presentable, intelligent, capable, active and  hardworking. She has admittedly only one C-grade GCSE because GCSEs require you in effect  to sit through an exam without having a seizure – and she has yet to manage this.  But she can read Dickens and budget and market and cook for the family and do at least as much maths as I can and she’s studying horticulture at college.

Has she ever worked?

Yes. Voluntarily. In a charity shop. She had a job in a pub for a couple of days – a pub which didn’t ask her about her health. And she did fine,  until her ‘emergency protocol’ fell out of her handbag – and then it was not that they didn’t want her – its just that she was only on trial and someone was more appropriate. Is she discriminated against? You tell me!

The interesting thing is, I know someone else with epilepsy which has been lifelong, but only recently diagnosed.

This put her in a position where the underlying condition was present throughout her life, but  there was no requirement for her to disclose it because she wasn’t aware that she HAD epilepsy.

A hidden disability indeed.

What happened to her? Well she might fall down occasionally, but she got a good degree, has had a very full working life  running a publishing house, editing a national paper, writing to deadlines through the night as a writer whilst managing  singlehanded as lone parent, sole breadwinner and 24/7 carer. She has always cycled everywhere because she never felt wholly safe to drive, but backpacks across China every summer she can, and is now in local politics. No-one expects she can’t do things.

Where doors for the other young woman are shut – doors for this person are always open.  She’d be astonished to be patronised.

Would she have had the same life if she had been diagnosed in her teens? I doubt she would have been allowed it.

There are only 2 things she (ok, I) can’t do. I now officially can’t drive, when in the past I didn’t drive through preference.  And I must write out any speech in advance just in case a momentary  flash from the temporal lobe  deprives me briefly of words. It’s hardly a big deal.

Let’s hope that an official diagnosis won’t change what society allows me to do, and how society allows me to work, eh?

And let’s look long and hard at what society is allowing others to manage.

It’s not only stereotypes we have to challenge,  its also the preconceptions of those who intend to support us!