Tag Archives: epilepsy

Epilepsy and GCSEs: built-in injustice

So today we hear that Michael Gove would like to abolish the GCSE system and go back to old fashioned O-levels and GCEs?  Maybe. (Though the Lib Dems  think otherwise)

In the interim let us hope he looks at whether he can find a system that will be any more fit for purpose  than the existing (GCSE) system  in assessing young people with  consciousness-fluctuating conditions such as as epilepsy. That is,  the very small percentage of the youth population who toggle between being ‘perfectly well’ and briefly ‘incapable’ without warning and at a moment’s notice. That bunch of young people whose gifts and capacities have  been so ruthlessly ignored  by our current inflexible educational system with teaching shifting between  ‘special needs’ and ‘failing mainstream’ without any acknowledgement of their actual abilities. People who could be easily become a Julius Caesar, an Edward Lear, a  Dostoievsky, a Socrates..

Here is  the case of modern-day  Ms X.

Ms X has no mental impairment except for that caused by the effects of bad epilepsy and the heavy-duty medications she has to take to try and control it. Ms X is sitting GCSEs for the Nth time. This is rather a tragedy for Ms X who studies up to seven hours a day, and has done so for six years to little practical purpose.

This is because if you have a catastrophic tonic clonic seizure before or during  a GCSE  exam, you are not able to put it off till a better time. ‘Use it or lose it‘ as they say – and lose it is often the result. Ms X’s seizures are so frequent it  is pretty unlikely she will ever go through the period GCSE exams take without one or two fairly substantial tonic clonic seizures on exam-days.

Sure enough, last week her parents  were woken by a loud crash at 6am in the morning of the longest Maths GCSE exam. On rushing into her room, they found that – apart from the ongoing tonic clonic seizure itself- she’d managed to drop from a standing position, hitting her head extremely hard, and cutting both her mouth and tongue.

She was lucky. She had no more seizures that morning  and so didn’t have to take the heavy barbiturate required  to prevent her going into status epilepticus and the hospital (as had already happened for her English exam two weeks previously). In fact, she was lucky enough to  ‘come round’ – well, at least regain consciousness – two hours later. Sixty minutes before her 2 hour Maths GCSE paper. Which naturally  could not be put off or rearranged for such minor trivialities as an early morning seizure.

Yet Ms X had had the equivalent of a knock-out blow to the head. I suspect that once again, she will not fulfil her potential.

What a different outcome there might have been for Ms X and for this exam if she were sitting it in the state of health she was in the day before – or the day after.

Successive ministers and education departments have not chosen to recognise the full extent of the difficulties of a student with epilepsy. Ms X has sat the same exams under Michael Gove’s, under Alan Johnson’s, under Ed Ball’s watch. All have talked about a world-class exam system.  None has recognised the injustice of insisting on a fixed-date one-off exam for those students with a serious yet fluctuating health condition.

Ms X is either bright, alert and mentally competent, or she incapable of remembering a thing. Is a GCSE exam instituted to discover what she knows – or merely what she is capable of remembering on one specific date?

If only Mr Gove, Mr Johnson, Mr Balls – if only every education minister that has ignored the exam issue had some recognition of the condition… If one day they were woken by having live electrodes attached to their brain for 5 mins and then were punched hard in the face without means of defence or a gum-shield (causing considerable pain and disorientation, broken teeth, split lips, bitten  tongue) and then were asked to prove all their last two years of knowledge in an exam paper 2 hours afterwards, would they consider this to be a reasonable test of their own abilities?

I suspect not!

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!

Epilepsy and DLA: the application

Many people end up at this blog having concerns about Epilepsy and DLA.

The underlying problem is that many people (medical professionals  included) have little or no understanding of how many different issues are encountered with epilepsy and what an impact it can have on trying to lead a ‘normal’ life. Would that it was just an occasional tonic clonic seizure, eh?

So for those with epilepsy, struggling to fill in a DLA form , and those who administer the DLA and haven’t realised how little they might know about epilepsy, here are some tips:

* Only claim if you actually need it.  DLA isn’t a reward for not being well – it is to help someone with a disability afford a life that mirrors more closely that of other people without that disability.  I have very mild epilepsy, my daughter has it very badly. If your life is pretty much the same as other peoples (like mine is) you probably aren’t eligible for DLA – but then you (I) don’t actually need it. There are plenty of people who really really do!

*The effects of epilepsy vary tremendously from person to person. Don’t think that the officials who look at the form will know what you are talking about: spell everything out. If the form doesn’t have a place for a problem, add it at the end.

* Remember that while most people know nothing about epilepsy, they carry a stereotype in their head (generally an actor acting a tonic clonic seizure  in a film or on tv). You must make sure that your application spells out the actuality as it is for you.

* ALWAYS maintain a full seizure chart  for each year, and keep them afterwards.  (I download a day by day year planner and fill it in online, with different colours and symbols for various seizures, interventions and outcomes. I note all changes of meds too. This means I can always print off a totally up-to-date one)  Use the chart to mark  not only seizures, but also the results (broken teeth, hospital admissions, episodes of status, period in intensive care). I have ten years worth now recording the appalling conditions in which my poor child has lived –  and wave them around at the slightest provocation.  I hand out updated ones at every doctors’ appointment so it appears on all the medical notes too. No-one can say that the information isn’t there!

* The DLA form doesn’t apply very accurately to Epilepsy. Spell out the effects of the epilepsy. For example:  Yes you can walk without difficulty for miles – unless you are having or recovering  from a seizure. However when you are walking you might suffer from an absence – crossing a road for example, or suffer a partial complex seizure and start behaving in a way that looks strange and might be dangerous.   Hazards are individual. Don’t forget to point them out if they exist.  Many people really won’t have any idea of the range of problems e brings with it..

* Estimate the time it takes to get over the effects of a seizure as well as the seizure – or all the different types of seizure you might have –  and the amount of looking after/out for that you require from others to try and ensure your safety.  If you’re ok in 5 mins, take two hours, or are not good for a day after a tonic clonic, make sure you point this out. If you fight to get up, but generally fall, mention it. If you have ten minute seizures at night, but this requires others to listen out for them, and  to check up on you during and for hours afterwards, make sure this is fully explained. If you can’t have a bath without an open door and someone in the house, or a shower without alerting people  to keep an ear out, or cannot go to a public toilet without making preparations for rescue if necessary, do point it out.  Many people would simply not realise this might be a problem.

*Save every piece of paperwork you are given because you can use them for supporting evidence: and my gosh, bad epilepsy gets you a lot of pieces of paper.  Prescriptions, appointments, letters from social workers/schools/ medical professionals etc , those never-ending bills for emergency dental work, discharge letters from hospital etc.

* Where they ask for names and contact details of all the professionals you have seen in connections with your epilepsy, make sure it really is all of them. We usually end up with eight or ten – and not by any means all medical. Take the time to track down accurate contact details: its worth it.When contacted, these are thye people who can tell it as it is!

* There can be awful and unexpected consequences of epilepsy . If you end up in a&e with broken bones and blackened eyes and a neck  brace because you fell;  or  in custody because your seizure was mistaken for the effects of drink or drugs; or end up lost and wandering because you have ‘missed’ some time, or even (god forbid) get attacked for looking odd, or behaving strangely, remember to photocopy the paperwork. It supports your statement -and makes people understand the range of dangers e brings with it.

* The same applies if you become aggressive or suicidal or incoherent with some meds. It is a tremendous inconvenience to put it mildly.

*Are your drugs time-sensitive? I have only recently realised this varies from person to person. Make sure you write down how many hours or days you can get away with after missing a dose/doses. I am not convinced that many people realise the RANGE of problems that can arise from missing meds.

* Similarly, if you need reminding, or pushing to  take your drugs, come clean. It adds to your proiblems

* Photocopy every page of your form  and every attachment and put it away for the future. If your claim is contested, and you think this is not reasonable,  you can then look and see if you have not been as clear as you thought

NB DLA is current until 2013/14. After this we will have to see how the new PIP support pans out. Currently I’m not believing either the “snatching the lifeblood from disabled children” brigade OR the “its safe in our hands” lot. Watch this space