People with epilepsy face a glaring employment gap, according to recent government figures highlighted by national charity Epilepsy Action.
Statistics show that as much as 66% of working-age people with epilepsy are not in work, prompting the charity’s calls for fairer access to, and treatment in, the workplace.
Around 220,000 people of working age in the UK identify epilepsy as their ‘main’ health condition, making it one of the most common serious neurological conditions in the world.
The employment rate for people with epilepsy is far lower than for those with most other disabilities, according to data from the Office for National Statistics.
The employment rate for people with epilepsy as their main condition is only 34% compared to 53% for people with disabilities generally, and 81% for those without a disability.
People with epilepsy are more likely to be economically inactive than people with any other disability and are more than twice as likely as those without the condition to be unemployed.
Furthermore, research by the Trade Union Congress (TUC) has also highlighted that people with epilepsy in work are paid on average 11.8% less than non-disabled workers.
This means that not only are people with epilepsy less likely to have a paid job, but when they do, they earn less than their non-disabled peers.
Epilepsy is a fluctuating and invisible condition, which affects individuals differently. Some people are unable to work at all. But depending on how epilepsy affects their daily life, many people can work with minimal adjustments.
Despite this, they commonly report experiencing hurdles when applying for jobs or within the workplace. They say that disclosing their epilepsy at interview stage can have a negative impact on their application. Many talk about experiencing discrimination from their employer or colleagues.
Philip Lee, chief executive at Epilepsy Action, said: “These figures are very worrying, yet they only skim the surface. Despite its prevalence, epilepsy is still a stigmatised condition in the workplace.
“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.
“This treatment can lead to fear of dismissal and even cause some people to hide their condition.
“Increased knowledge and a change in attitudes are the only ways we can start to close this inequality gap.
“We are calling on employers to take simple steps to help support people with epilepsy. They 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.”
Mr Lee continued: “Previous governments have talked about closing the disability gap. But they never even got off the starting block. Clearly, there is still much to do to help people with epilepsy find and stay in employment.
“We want to see the new government introduce much-needed, targeted employment support for people with epilepsy, including improvements to the Access to Work scheme.”
In a recent Institute for Employment Studies report, commissioned by Epilepsy Action, employers admitted they were reluctant to hire people with epilepsy, largely due to concerns over safety.
This is backed up by data that reveals more than three quarters (76%) of people have not been offered any training on how to support a colleague when they have a seizure at work.
This is despite current UK regulations requiring employers to provide staff with the required health and safety information and training.
Luke, 26, was diagnosed with epilepsy five years ago. He works full-time for a telecoms company. However, getting his current job proved challenging.
“I had to apply for the job twice,” he says. “I had a focal seizure in the first interview and was rejected for the job. I emailed them for feedback but heard nothing.
“I asked again, this time quoting a few laws about employment discrimination. They phoned back immediately, telling me to apply again because they’d love me to interview once more. I applied, got an interview (this time I was fit and well!) and I got the job.”
But despite being aware of his epilepsy, his manager and colleagues didn’t fully understand the extent of his condition.
Luke reflects: “My team manager was new and incredibly keen on good stats and customer surveys. But as part of this, he took disciplinary action against me because I had higher than usual absences.
“Although it is company procedure, it seems my health information was never actually submitted. My manager was more concerned that having someone with epilepsy on his team would count against him.”
“One day, I had a focal seizure and drooled over my keyboard, breaking it in the process. Only then did the other managers realise I have epilepsy.
“My employers have since been very supportive of me, my appointments and of my upcoming surgery.”
Luke’s workplace has created a document to help staff whose circumstances could have an impact on their ability to work. This includes health, disability or caring responsibilities.
Developed with trade unions, this voluntary document encourages employees and their line manager to record any information and agreed actions.
The emphasis is firmly on what Luke can do rather than what he can’t, helping to remove any barriers that might prevent him from making a full contribution at work.
Luke has been able to list exactly how his epilepsy affects him, his seizure types, how to treat him and who to call in an emergency. He also lists his medications, first aid and any adjustments that could help support him.
“It makes a real difference knowing people understand epilepsy and know how to help me,” Luke says.
“Now my epilepsy is out in the open, I can relax a lot more. But epilepsy is clearly a condition that scares employers.”
Epilepsy Action is currently developing a toolkit to help businesses support their staff with epilepsy and delivers bespoke training sessions to employers.
These help staff to understand how best to support a colleague with epilepsy, as well as discuss any reasonable adjustments that can be made in the workplace.
It also has a helpline team who offer expert advice on a range of issues, including employment. To find out more, visit epilepsy.org.uk/awarenesstraining or call the Epilepsy Action freephone helpline 0808 800 800 5050.