Employment Toolkit launched to help people with epilepsy

Published: May 27 2021
Last updated: August 01 2023

A new Employment Toolkit has been launched this week by Epilepsy Action to better support people with epilepsy in the workplace. This follows what the charity calls “a dire need for more understanding of the condition” at work.

Only 34% of people with epilepsy of a working age are in employment, according to figures from the Office of National Statistics. Those who are, earn on average 11.8% less than people without epilepsy.

One major barrier for people with epilepsy to get and stay in work is a lack of understanding around the condition, Epilepsy Action said. A 2016 YouGov survey showed that a quarter of respondents (26%) were concerned about working with someone with epilepsy. Of those, nearly two-thirds (63%) said it was because they didn’t know how to help a colleague having a seizure.

People with epilepsy report being humiliated in front of colleagues, demoted, redeployed or even made redundant because of their epilepsy.

The new toolkit is designed to give employers the confidence to help staff with epilepsy. It includes templates to provide support, assess risks and talk about epilepsy. It also offers descriptions of a range of different seizure types, as well as access to detailed first-aid videos.

The toolkit aims to encourage better communication between employees and employers to allow better support and reasonable adjustments to be made.

Daniel Jennings, senior policy and campaigns officer at Epilepsy Action, said: “Most employers want to do the right thing and support their staff, but often lack knowledge around equality laws and safety issues. Some people with epilepsy don’t disclose their condition, for fear of a negative reaction. We hope this toolkit will prompt positive discussions between staff and managers. A few conversations could make a world of difference.”

Sally Wilson, senior research fellow at the Institute for Employment Studies (IES) said: “Research indicates a gap between employers’ desire for openness and people with epilepsy’s difficulties in discussing health conditions. This toolkit could guide employers and employees in their conversations and promote a better understanding in how best employers can support their staff.”

Miles’ story

Miles* has had epilepsy since he was 17. His seizures are controlled and he is aware of his triggers – alcohol, anxiety and stress. When he does have a seizure, it’s within an hour of him waking up.

Miles’ company became aware of his epilepsy and treated him fairly and equally initially. However, after Miles had a seizure one morning before work, things changed.

“When they found out I had a seizure off-site, they made my life hell. They sent me to occupational health, where I explained that I was fine to work, as my condition was stable. I was told to see a neurologist. Again, I explained I was fit to work, that my seizures are rare and happen within an hour or so of waking. The occupational health doctor Googled ‘epilepsy at work’ and then advised no working at heights or lone working. I wasn’t even allowed to stand on a ladder. When I objected, he told me I wasn’t a neurologist and couldn’t vouch for my own safety. He said he had to err on the side of caution.

“I faced seizure-based jokes from my manager, including that I should be on a dog lead. The most humiliating thing was when they amended the doctor’s report and said I needed to walk around in a harness and a restraint. Despite all my experience and training, I was told I was no longer good enough to work there and offered a lump sum to leave. I refused, quit my job and took legal action.

“During this process, I’ve found out more. The company were saying that I was in denial about my epilepsy. That I was just seeking a settlement. They now deny ever knowing I had epilepsy, which hurts. They were the only firm ever to accept me when I told them about my condition and to let me work freely.

“People with epilepsy should not have to face stigma from employers who don’t understand it. They fear that person will have seizures in the workplace. The fear and the not knowing leads to discrimination. I also believe occupational health need to be given further training. In my case, they were over-cautious, again thinking solely of me having a seizure at work. In fact, the law states I can work freely if epilepsy is not an issue for me, or a safety issue to others. I proved that for many years, yet that right was taken away from me on health and safety grounds.

“I want to show everyone, from people who have epilepsy to friends and family, that you can live a normal life with epilepsy.”

*name changed