Employing people with epilepsy: nothing to fear

People with epilepsy have one of the lowest rates of employment among disabled people.

According to the Office for National Statistics, only 34 per cent of people who identify epilepsy as their main health condition are in work. Disabled people are more than twice as likely as non-disabled people to be out of work.

Not only do people with epilepsy often find it difficult to get jobs, but, according to research by the Trades Union Congress, they are paid on average 12 per cent less than non-disabled workers.

Epilepsy does not need to stop people working and it shouldn’t be a reason not to employ someone. But it often is. A 2023 study by Epilepsy Action found more than two in five employers would be inclined not to hire someone with epilepsy to save their company potential challenges, despite knowing they shouldn’t. It also showed 60 per cent of people with epilepsy had experienced unequal treatment or discrimination at work because of their condition. More than a third (36 per cent) had heard a colleague or their employer make a derogatory comment about their epilepsy, and 33 per cent had been bullied because of it.

Photograph: iStock/ThitareeSarmkasat

In response to these statistics, Epilepsy Action launched a campaign. The #MakeThingsWork campaign calls for the introduction of a minimum fine for employment discrimination against people with epilepsy – five per cent of a company’s global turnover. This was backed by more than 1,851 people who signed the charity’s petition. You can add your name here.

Unequal treatment at work

Epilepsy Action deputy chief executive Rebekah Smith says it is unacceptable for so many people with epilepsy to still face unequal treatment and discrimination at work: “What’s even more concerning is seeing how widespread the misunderstanding of the condition seems to be among managers and employers, the very people who have the power to hire and dictate company culture.

“We want more people with epilepsy who can work to get the opportunities they deserve, get the jobs they want, and succeed in their careers. To do this, we need attitudes to change now,” says Smith.

It doesn’t have to be like this. Employing people with epilepsy is good for the economy. According to the 2017 government White Paper The Future of Work, Health and Disability, employing more disabled people could save the exchequer £240 million and boost the UK economy by £260 million. And many people with epilepsy have long, fulfilling careers.

Murray works for the Royal Mail and Parcelforce. He began working there aged 16, around the same time as he was diagnosed with epilepsy. He says: “I told them I had epilepsy and they were completely fine. All they wanted to know was how they could help.”

He adds that he was always stationed around people who could help, as the company has a one in 25 policy for first aiders. Murray adds: “We’re a disability-confident employer. We don’t insist people tell us, but we do promote it. People talk and we have forums for people with disabilities.”

Murray has been with the company for 27 years and he now works in HR. But not everyone’s experience is so positive, he says.

Murray volunteers with Epilepsy Action to provide support when other people with epilepsy have problems at work. Last year, he volunteered at the London Let’s Talk About Epilepsy event.

“I’ve heard some horrific tales at other companies. At the Let’s Talk roadshow I heard people saying they were dismissed because they had a seizure at work. They had asked for help through occupational health and they hadn’t been referred. I was shocked at some of the things I heard. From my position as a HR manager, I don’t think some of the things were legally sound,” he says.

Photograph: iStock/Halfpoint

He acknowledges that his experience has been easier than others. “It was easier for me, at 16, to find out I had epilepsy. My colleague, who has been diagnosed at 43, has potentially just lost his career because it’s to do with driving. But, when people are looking for help through us, I can point them towards occupational health at work, towards private healthcare and towards Epilepsy Action.”

Consider health and safety risks

Most jobs should be available to people with epilepsy. They can only be refused roles if there are health and safety risks to them or somebody else (for example, this might apply if the job involves activities such as working at height, operating machinery, driving or lone working). However, employers cannot use health and safety as a reason not to employ someone with epilepsy unless they can justify it. They can only do this after a health and safety risk assessment has taken place and if there are no reasonable adjustments that could make the role safe.

Equality laws are not something to get “hung up about”, says Murray. “It’s nothing to be scared of. You just need to talk to the person. Treat them like anyone else. See how you can help them. It doesn’t mean you can change everything.”

As an employer, you may not know if a member of staff has epilepsy, because they are not required to tell you unless it will affect their ability to do their job safely and effectively. However, under the Health and Safety at Work Act 1974 all employers must provide a safe workplace. So, if you know your employees may be at a greater risk due to their condition, you must protect them from any possible danger to their health while they are at work.

Epilepsy Action’s 2023 survey found that a quarter of UK managers were in the dark about reasonable adjustments for people with epilepsy. It also found that 40 per cent of employers were aware or had heard of an employee’s epilepsy being used as a reason not to give them additional responsibilities or a promotion at their current company.

Murray believes education is key. “In the workplace, there’s always been the fear of not knowing what to do. People have seen me have seizures and it has scared people.”

A great place to start is to train yourself and your colleagues on epilepsy first aid. Epilepsy Action has a video that explains what to do – you can find it here.

Seizure action plan

There are other practical steps an employer can put in place. A seizure action plan tells managers and colleagues what to do if a person has a seizure. This involves explaining how that person experiences seizures, if there are any triggers, if there are any warning signs and if they need to take medication at work. Seizures affect people in different ways. Some people may recover quickly and feel ready to work straight away, others may need an extended period of rest or to go home.

Grace Wood is publications officer at Epilepsy Action. Photograph: Epilepsy Action

A workplace might also consider an epilepsy risk assessment. There is no requirement to carry out a separate risk assessment for disabled employees, but an employer should understand how epilepsy affects their employees and what the risks might be. As epilepsy is a varied condition, it’s unlikely a general risk assessment will identify appropriate control measures for a staff member with epilepsy. A risk assessment may identify that there are no additional safety measures needed, or it could identify controls that would make work safer for all.

Employers might also be concerned about staff taking time off work for illness or medical appointments, but if a person has their seizures under control – with the right treatment, more than 60 per cent of people with epilepsy stop having seizures – they are unlikely to be off sick any more than other employees.

Managing the triggers

Stress is often one of the main triggers for people with epilepsy, as is tiredness, so employers should talk to their employees about maintaining a healthy work–life balance. Memory is also often an issue for people with epilepsy. To help employees who struggle with memory loss, create a work environment free from distractions, provide extra learning time, repeat instructions and encourage staff to use tools such as checklists, notes and visual reminders. Murray has found epilepsy affects his memory and this has had implications for his career. “I’ve got a terrible short-term memory. I use lots of writing aids,” he says.

He believes people with the condition need to understand how it might impact their work.

“I’m always asked why I didn’t progress past my level,” he says, but: “I’m happy in terms of what I’m doing. I don’t need any more money. My condition has got me to a certain point and, I think, as far as I can take myself. I know my limits. I’m not going to apply for a job at the top of a ladder.”

Sometimes a medical professional will give work-related advice. For instance, Murray’s GP requested he didn’t work nights.

“My company stopped me working nights. The employer asked for further medical evidence with my consent and used occupational health services.”

The key thing to remember is that everyone’s epilepsy is different. Murray says: “People with epilepsy can do the job as well as anyone else. You’ve just got to talk to them about their condition and make sure you understand it. I always say to managers: ‘Understand their epilepsy. Not everyone’s epilepsy is the same. Ask them about their epilepsy. Learn about it. Don’t be scared to ask questions.’”

You can find more information in the Epilepsy Action Employer toolkit.

If you want to do even more to support people with epilepsy in the workplace, join us for Purple Day on Tuesday 26 March by raising money and helping to make a difference. There are lots of ways to get involved and Epilepsy Action is here to help you every step of the way. Sign up for your free fundraising pack full of ideas, tips and inspiration to turn your workplace purple.

Epilepsy: busting the myths

People with epilepsy can’t drive

In the UK, if a person has seizures that affect their consciousness they will usually need to be seizure free for at least 12 months before they’re allowed to drive. However, if their seizures always start when they’re asleep, they might be allowed to drive even if they continue having them. People may also be able to drive without being seizure free if their seizures never affect their consciousness or movements. The rules for group two licences (bus, coach or lorry) are much stricter.

People with epilepsy must avoid bright lights

Photosensitive epilepsy is when seizures are triggered by flashing or flickering lights, or high-contrasting patterns. Though only about three in every 100 people with epilepsy have it, it is something people often presume. Murray recently experienced this at a gig. “I mentioned I had epilepsy and the manager came out and said: ‘I don’t think we can let you in.’ I said: ‘Why?’ He said: ‘We have lots of flashing lights.’ I said: ‘I’m not photosensitive. None of that stuff affects me. I’m going to go in there and I’m going to be dancing all night long.’”

All seizures involve falling down and shaking

There are more than 60 types of seizure. The most well-known is the tonic-clonic, in which a person will go stiff, fall to the floor and jerk. But, during some types of seizure the person may remain alert and aware of what’s going on, while having unusual sensations, feelings or movements. With other types of seizure, they may lose awareness and behave oddly.

If you see someone having a seizure, call an ambulance

Most seizures don’t require an ambulance. A lot of people will be able to continue as normal after a period of rest or sleep. A seizure lasting longer than five minutes is an emergency. You should also call 999 if it is their first seizure, they are not regaining consciousness or they are struggling to breathe afterwards.

Grace Wood is publications officer at Epilepsy Action.

Epilepsy Action has a range of training options to help businesses, charities and other organisations support people with epilepsy in professional environments. Find out more at:

epilepsy.org.uk/training

For more guidance see:

epilepsy.org.uk

employers.epilepsy.org.uk

epilepsy.org.uk/living/work