Epilepsy and the Leaving Cert: ‘If it strikes, that exam is over for me’

What happens if a student has an epileptic seizure during his or her Leaving Cert? You might presume they would be allowed to resit or that they would get some kind of dispensation.

You would be wrong. For these students, there are no allowances: if they have a seizure during the exam, it is game over. And by a conservative estimate, there could be at least 100 of them every year.

Seán Fenton is 18 and is due to sit the Leaving Cert this year. His epilepsy started to manifest itself when he was 12.

"It began with five or six petits mals [minor seizures] a day and has got progressively worse," he says. "They're called minor but afterwards I can barely speak, stand up or understand what's going on around me. Recovery takes about an hour. I also have occasional grands mals [major seizures], on average every few months. "

Before secondary school, he had above-average grades, particularly in maths. His mother, Nuala, says he was bright, sporty, social and sunny.

But the seizures and the medication – which has side effects that include depression, insomnia, fatigue, aggression, concentration problems and nightmares – have taken their toll on his physical and mental health and on his grades.

For his Junior Cert, he was given extra time and his own centre, but he had seizures during some of the exams, leaving him unable to answer the questions. As the exams progressed, the stress got worse, bringing on more seizures. He didn’t get through all the papers.

After the Junior Cert, his parents made the difficult decision to send him to Glenstal Abbey, a fee-paying boarding school that was able to offer him more support.

It has made a big difference, and a new regime has lessened the worst side effects. However, he still faces a virtually impossible hurdle in the shape of the Leaving Cert exams.

“I do well in school. I get good grades in class and in my essays. I asked the State Examination Commission for a scribe in the Leaving Cert because the seizures act on my brain, and afterwards I’m not able to write,” he says.

The commission initially refused him a scribe, but he was granted it on appeal.

Decisive factor

“I have asked for extra time in the exam, but those 20 or 30 minutes won’t be a decisive factor unless I’m very lucky and have no seizures. What people with epilepsy or other neurological conditions need are spaced-out exams or the possibility of splitting them across two years. If it strikes, that exam is over for me; yes, I can repeat next year, but there’s no guarantee it won’t happen again,” he says.

His parents wrote to the commission and explained that one seizure could ruin his chances of going to third level. It replied that, although it would do its best to accommodate students, “there are no circumstances under which a candidate may sit an exam on a date other than that scheduled on the official timetable”.

The commission says that, because there was no continuous assessment – only a terminal exam – some students “will take particular tests at a time that they do not consider optimal for them” and that Ireland’s exam system is “in stark contrast to the position in other countries”, where school-based assessment is more common.

Second-level teacher unions have opposed the introduction of a similar system here, and the prospect of Leaving Cert reform is receding, leaving Fenton and many other students for whom the system is not a good fit without much hope.

The commission says it has considered allowing candidates to sit an alternative paper on an alternative day, but that the exam timescale and other logistical difficulties make this impossible.

It seems, to some extent, to be out of their hands: any change would have to be brought about by government and, in all likelihood, approved by the unions.

The commission says the exam system as it stands reflects the views of the education partners, which include the Government, parents and teacher unions.

“This has taken away my dreams,” says Fenton. “I want to do my Leaving Cert. I always wanted to be a doctor. That’s gone now, but I think I could do well in psychology, law or neuroscience. I think I would do well in college, where they are more accommodating. The Leaving Cert is a memory test: it doesn’t define your intelligence but it does define your future.”

The issue is wider than epilepsy and is affecting other children with neurological difficulties. One mother, whose son has a brain injury following a road traffic accident and struggled through school as a result, says he would not have got through without significant parental support and a constant battle for resources.

Another parent has spoken on RTÉ's Liveline about how her child, who has narcolepsy, is not accommodated by Ireland's exam system. The Fentons point out that Seán is relatively fortunate to attend a private school and to have extensive support, but there are hundreds of other, more marginalised voices who are not being heard.

Back-up papers

"Epilepsy is a very individual condition and affects different people in different ways, but in the vast majority of cases a seizure during or before an exam will prevent the student from performing anywhere near their best on the day," says Peter Murphy, chief executive of Epilepsy Ireland.

“Additional time, rest periods or sitting an exam in a hospital are not going to compensate for the severe after-effects of a seizure: exhaustion, confusion, nausea, headache, disorientation or even temporary amnesia. The only way to ensure a level playing field is to look at new ways of expanding the existing range of accommodations, including a range of practices which are commonplace abroad.”

Murphy says back-up papers are already produced anyway, and that if the will were there these students could be accommodated.

The commission says that if repeat exams are allowed, there is a risk that students who feel they have not performed their best in the original exam would look for a second chance.

“The floodgates will not open,” says Murphy. “We are talking here about confirmed medical situations verified by a doctor. Surely as a progressive society we should be valuing the right of the individual to demonstrate their level of attainment in an exam situation over any logistical difficulties that changing the system might entail?”

KATIE’S STORY: ‘I WILL HAVE AT LEAST THREE SEIZURES DURING THE EXAM’

“I’m lucky: I have about 20 seizures a day but I can usually function afterwards. It started when I was eight, and I was diagnosed at nine. It got really bad at about 13. During my seizures, I fall down and shake all over and am usually unconscious.

“I missed most of my third year in school – I spent it in hospital – and I left the school I was in to go to another one. I’m 18 now and my Leaving Cert is this year. I haven’t been able to go in to school as I have about 10 seizures a night, and they wake me up. If I’m really tired I can have more serious seizures and end up in hospital.

“I do go in for art class but I’m doing the rest myself. I get about 10 hours of home tutoring a week but that’s nothing compared to what other students get. The Leaving Cert, as it is structured, isn’t possible for me. I can’t write for that long. Two exams in a day are very difficult , and my brain can’t focus for two hours. I’m touching wood and hoping, but I will have at least three seizures during the exam. I don’t know how I can get through a week of compacted exams. If I have a lot of seizures the night before the exam, I’m screwed.

“What should happen? I know it needs to change. Maybe more continuous assessment. I know there will always be an outlier or someone who can’t be accommodated, but there are many students like me. Mum is a bit worn-out with the bureaucracy. What if she wasn’t so articulate or well-organised?

“I’ve been accepted to two PLC courses but it’s still dependent on my passing my exams. UCD has a new sports course, which is interview-only, but I still need my exams. I love sport and ran the Dublin marathon last year. I train all the time. I have a seizure, I get up and I keep going. I have high expectations of myself and I’m pretty determined. Even with this, I can have a life, given a chance. I’d just like a shot.”

THE EXPERT VIEW: A MATTER OF EQUITY

Of the 119,000 students who sat the Leaving Cert or Junior Cert last year, about 560 have epilepsy. Based on five studies, Epilepsy Ireland conservatively estimates that at least 100 a year will encounter the difficulties outlined here. However, the true figure might be higher.

Dr Joyce Senior, director of the master's in education in UCD, says the problems of epilepsy are not always fully appreciated. Dr Senior and her colleague Dearbhla Crowley published a study in 2015 that found many teachers were not aware of how epilepsy can affect learning, behaviour, concentration and mental health.

Dr Senior says students who have seizures cannot properly sit the exam and are essentially excluded from the CAO. The seizures can be triggered by stress, tiredness and irregular eating patterns, all of which go hand in hand with the Leaving Cert. The State Examination Commission’s only concession – sitting an alternative paper under supervision – is not an option if the student, having had a seizure, is exhausted or if they have another exam on the same day.

“For some, seizures make the Leaving Cert process insurmountable, which limits their college and life choices. This is questionable in terms of equity and rights,” she says.

• Dr Joyce Senior has produced an information pack for primary and postprimary teachers working with children with epilepsy. More information at epilepsy.ie