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!

2 thoughts on “Epilepsy and GCSEs: built-in injustice”

  1. My daughter is going through exactly what you describe. She is due to take her GCSEs this summer (2104). Her school are being very helpful in requesting concessions which they feel she does deserve, but the exam boards are not agreeing to anything helpful. Her consultant is writing to explain the issues to the board but, although they have measures available, they are not willing to grant them to her. (her medication causes memory problems as well as having issues from the seizures). If anyone has any advice on how best to obtain special consideration I would be very grateful to hear. Thank you.

    1. We had no luck with the educational system recognising Epilepsy, full stop. I would suggest that you try contacting the Young Epilepsy helpline – they have been helpful to me on many occsions in the past

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