Horrific epileptic fits left me curled up exhausted on classroom floor – thousands like me are being shut out of work
SCHOOLCHILD Hannah Burrows lay lifeless on the cold, metal floor of the classroom as she struggled to stay awake.
Her teacher left her there, claiming 'she's just being lazy,' but little did her teachers know the six-year-old was trying her best to soldier on after a horrific night of relentless seizures.
Sadly, the scene was far from a one off. Shocking new statistics show people with epilepsy are the worst affected disability group in education and employment – more than those with severe disfigurements and heart problems.
Figures from the Office for National Statistics (ONS) show that Brits are more likely to have a degree than to have no qualifications at all – but those with epilepsy are the least likely to have a degree and the most likely to have no qualifications out of all disability types.
But although more than half of Brits with the condition don't have seizures (52 per cent), over a quarter have no qualifications and the majority remain unemployed.
Louise Cousins, a spokesperson for Epilepsy Action, says children with epilepsy are likely to miss a lot of time in the classroom because of seizures, recovery time, and medical appointments.
"It’s shocking that so many people with epilepsy struggle to gain qualifications," she tells Sun Online. "Sadly, though, it is not surprising.
"Our current education system does not meet the needs of many children with epilepsy. This has a knock-on impact on their lives and future prospects."
'You just lose confidence'
Seizures and anti-epileptic drugs can make kids extremely tired and create problems with concentration and memory – though these difficulties often go unrecognised and unsupported in school.
Hannah, now 42, from Swansea, said at school she was made to feel lazy, stupid, and clumsy because of her epilepsy.
She believes the low qualification rate for people with the condition is due to the students' lack of confidence.
Hannah experienced her first seizure when she was just six years old.
What I remember most about school is being told off… I learnt how to play truant
"What I remember most about school is being told off because I couldn’t remember what we were doing in a particular subject after a bad night of seizures," Hannah says.
"Your memory just doesn't stick.
"You lose confidence. You want to do well but then you get knocked down."
Hannah skipped classes as she felt unsupported.
"I learnt how to play truant", she says. "Especially when I got older."
Hannah left school with no qualifications at the age of 16, claiming her GCSEs had been an "absolute failure".
Hannah now stresses how important it is that children with epilepsy get the support they need in school.
"When you’re that young and not getting the support, it affects friendships and what the teachers might think of you," she says.
Lack of understanding made me feel like an outsider
Ana Patterson, 20, from Twickenham, thinks that the low qualification rate among people with epilepsy could be because kids with epilepsy in school can feel like an outsider.
Ana was diagnosed at 14-years-old with photosensitive epilepsy and experiences tonic-clonic seizures – "the typical movie kind of seizure where you go unconscious and start shaking," she says.
"I don't think staff or teachers really know how to deal with epilepsy.
"I don't blame them too much because epilepsy is a disorder that is so different in each individual so I think some of that problem comes from the lack of communication between the hospital and school.
"But I often felt like a liability and that people weren't always sure what to do."
Ana says her school were often too quick to call the ambulance when they didn't need to as in her case of epilepsy, an ambulance only needs to be called if the seizure lasts for five minutes or longer or she hurts herself.
"I felt as if everyone was tiptoeing around me, and this lack of understanding made me feel like an outsider," Ana says.
"I think we need to recognise epilepsy in education and schools as these children need to grow up and feel accepted.
"They need to feel like there are people looking out for them but that they can be just as normal as the next people, their classmate, who is neurotypical and fine."
Discrimination in the workplace
But the education system is not the only area where people with epilepsy face particular challenges.
The same disparities are sadly mirrored in the workplace where 66 per cent of working age adults in the UK with epilepsy are out of work – compared to the national unemployment figure of 24 per cent.
Philip Lee, chief executive at Epilepsy Action, says that epilepsy is still a stigmatised condition in the workplace.
"These figures are very worrying, yet they only skim the surface," he adds.
"From the initial application and job interview process to the day-to-day experience of working, many people with epilepsy encounter clear barriers and discrimination."
Hannah re-sat her GCSEs in her twenties and went on to study for a degree in volcanology with the Open University.
But she remains out of work and still feels discriminated against because of her condition.
"I feel like I'm on the scrapheap," she said. "Even though I know I can contribute to this society."
"As soon as I say that I have epilepsy, which is reasonably controlled because I have a VNS implant (a device used to treat seizures), employers will just say, 'Oh, well thank you but we’re not interested,' and that’s it.
Epilepsy: the facts
Epilepsy affects around one in every 100 people in the UK and one in every 220 children.
It's a neurological condition where sudden bursts of electrical activity in the brain cause symptoms including seizures, unusual behaviour, and sometimes loss of awareness.
Epilepsy can sometimes run in families or begin after head injuries, but its precise causes aren't always clear.
Medication can be taken to manage seizures, but it's often a lifelong condition.
Most children with epilepsy can go to mainstream schools, take part in sports, and get a job when they're older.
But certain activities like swimming, driving or certain jobs may be more dangerous for people with epilepsy.
"Or they will say, 'Yes we can try you for three months,' and then after three months they will come up with an excuse and say, 'Oh actually, we’re closing down' or, 'We don’t need you anymore'.
"Two weeks later you will see the same job you’ve just been doing for the last three months advertised again.
"You just lose hope in the end."
I just thought I'd rather quit my job than make myself ill!
Sophie Wild, who is currently studying politics and human rights at Leeds Beckett University, always felt supported in education.
Yet the 20-year-old, from Lancashire, has already felt discrimination in the workplace due to her condition.
Sophie worked in a chain fashion shop part-time while studying, but ran into problems when she changed stores.
"My new manager gave me loads of grief about my absences from when I was at the other store and he said that I was going to get investigated for having too many absences," Sophie says.
"One time I rang in sick and he was on the phone to me for 45 minutes giving me grief about my absences from when I didn’t even work there and from when I was in hospital and had a two-week sick note.
"He just wasn’t listening to me and I was trying to explain to him that I have days where I can’t get out of bed and he was just being really dismissive of it.
"I was upset, I was crying on the phone and he was still going on at me so I just thought I’d rather quit my job than make myself ill."
Sophie said that because epilepsy is an 'invisible disability', she doesn't feel that she faces day-to-day discrimination.
But she admits she feels nervous telling people she has the condition, particularly employers.
"I think it makes people nervous – if I tell someone they’re always really shocked.
"I feel like if I applied for a job and they knew that I have epilepsy they might not want the burden of someone having a seizure in the workplace or being off.
"I feel like it makes people scared."
Rights for people with epilepsy
Schools are required by law to make reasonable adjustments to help children with epilepsy.
These could include allowing extra time, repeating things already taught, regularly checking that pupils have understood lessons, and allowing extra time in exams.
"With the right support from medical professionals and school, children with epilepsy can flourish in education and reach their full potential," a spokesperson from Epilepsy Action told Sun Online.
Under the Equality Act, people with epilepsy are legally protected from discrimination in the workplace and in wider society.
Lee calls on employers to take simple steps to help support people with epilepsy.
"Increased knowledge and a change in attitudes are the only ways we can start to close this inequality gap.
"Employers should encourage transparency from the outset and make it their business to learn more about epilepsy.
"It’s only then that they can improve workplace culture and create a level, more inclusive, playing field to help people with epilepsy pursue the career they want.”
A government spokesperson said: "The safety, wellbeing and outcomes of children with complex needs – including those with epilepsy – is a priority for this Government.
"Schools must follow our statutory advice on supporting pupils with medical conditions so that they have full access to education, and can enjoy the same opportunities at school as any other child.
"Throughout the pandemic we have supported families of children with SEND, kept schools open for children with education, health and care plans where appropriate, and signposted to high quality online learning resources.
"We now spend a record £55billion a year to support people with disabilities and later this year we'll launch a national strategy to set out how we can better support them to have equal access to all spheres of life."
Epilepsy support and resources can be found at epilepsy.org.uk
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