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A work in progress: what research says about employment and epilepsy

2 May 2019

People with epilepsy often report that they struggle to find or stay in a job. A new piece of research has looked into why this might be and what tools would help to reassure employers and empower people with epilepsy looking for work

Getting a job is something most of us strive for. Work can be a way to earn a living and offer a feeling of security. But it’s also about more than that. It’s an opportunity for us to follow our interests and ambitions. It is linked to our confidence and self-esteem. And it can add to our social life and create a routine for us.

Finding a job is undeniably an important part of life for many of us. So, it makes it even more of a serious problem that people with epilepsy report facing challenges in this arena. Past research has confirmed this. It has shown that people with epilepsy are more than twice as likely to be unemployed as people without the condition.

Epilepsy Action wanted to better understand the reasons for this and what can be done to improve the situation. To do this, the organisation requested a piece of research from the Institute for Employment Studies (IES). This aimed to find out what barriers exist for employers and people with epilepsy and find ways to tackle them.

The IES researchers interviewed six employers and four experts in employment, clinical practice and research. They also held focus groups with people with different forms of epilepsy and different employment experiences. They wanted to compare epilepsy and other long-term conditions when it comes to employment support. They also set out to find out what information would reassure an employer. Finally, they wanted to know what employment support would be useful for people with epilepsy.

A knowledge barrier

Throughout the interviews, the researchers realised that a lack of understanding of epilepsy created a big problem. Employers were often not familiar with the different types of epilepsy. They were not aware of the different ways in which epilepsy can affect different people. They also didn’t realise that epilepsy medicines could control the condition in some people. Employers often weren’t aware that not everyone’s seizures are triggered by flashing or flickering lights. They also weren’t familiar with the fact that not everyone has tonic-clonic seizures.

The research found that this often left employers worried about health and safety. They were nervous about how clients or colleagues would react seeing someone have a seizure. Employers also said that it could be costly and impractical to make adjustments for people with epilepsy in some circumstances. 

Employers were generally “not positive” about employing someone with epilepsy, the research found. However, when they were given more information, they seemed more willing to keep an open mind. As well as that, employers seemed to be happier to make adjustments for an existing employee if they were newly diagnosed with epilepsy.

The findings also showed that people with epilepsy also struggled because of a lack of understanding of epilepsy. Many of the people with epilepsy in the focus groups said they didn’t fully understand their own epilepsy. Many said they struggled to explain the nature of a fluctuating condition. This left them feeling uncomfortable about teaching their employer about it.

Epilepsy fears

The interviews with the experts revealed that they believe stigma plays a big part in shaping employers’ attitudes. While they said this was true for other health conditions too, they found that this was especially so for epilepsy. The experts described employers as “fearful” and “ultra-cautious”. Some experts said they believe employers might sometimes use health and safety worries as an excuse not to employ someone with epilepsy.

The experts compared the stigma to that people with mental health conditions might experience. They said that past research has shown that employers were particularly wary of employing people with invisible conditions. 

The experts acknowledged that epilepsy can often come with mental health conditions like depression and anxiety. They noted that these conditions can also affect people’s confidence and self-esteem. Both having epilepsy and having an additional mental health condition could affect the jobs and opportunities people went for. The research found that people may not be going for jobs that use their talents and skills. It suggested they were often held back by a lack of confidence.

To say or not to say

Generally, employers aren’t allowed to ask people questions about their health without a good reason. In applications and job interviews, they would only be allowed to ask if it is linked to an essential part of the job. They could also ask in case they need to make reasonable adjustments.

Once a person is offered the job, they don’t automatically have to tell their employer about their epilepsy either. But this is as long as they believe it won’t affect their ability to do the job safely and effectively. This is, for example, if their seizures happen at night, or are such that they can still do the job. If a person doesn’t tell their employer about their epilepsy and it does affect their ability to do their job safely, their employer could dismiss them.

Not telling an employer about epilepsy could also mean that a person is not covered by their employer’s insurance. Without knowing about their epilepsy, employers also won’t be able to make reasonable adjustments for employees. These could include making changes to working hours, making alteration to working space or allowing a person to use different equipment. There is more information about work and epilepsy on the Epilepsy Action website.

It’s not always easy to know the right thing to do about whether or not to let an employer know about epilepsy. But the IES research found that people with epilepsy and employers had very different views on this issue.

The employers interviewed expected people to disclose their epilepsy at the application stage, at their interview or immediately after starting the job. The reasons given were around safety and managing any adjustments. Almost all of the employers said they would take a ‘dim view’ of not being told about an employee’s epilepsy and finding out at a later date.

In stark contrast, the people with epilepsy in the focus groups didn’t feel comfortable telling their employers about their condition until they were established in a job. Many people felt that they had faced discrimination in the past. This had made them fearful of letting employers know about their condition. As well as that, a lack of knowledge about epilepsy meant people didn’t feel confident in explaining their epilepsy to their employer. 

Supporting open conversation

The research found that there is a gap in communication between people with epilepsy and employers. A lack of understanding breeds fear and stigma in potential employers. But people with epilepsy feel like they need support to be able to explain their condition effectively. The researchers suggested that a personalised online toolkit that people could use, would guide conversations between employees and employers. It would have information about health and safety, reasonable adjustments and common concerns.

The researchers also found that self-management tools would help people with epilepsy to build their confidence. This could help them to feel more comfortable understanding and describing their epilepsy to an employer. People also thought having someone with them to help them talk about epilepsy would be helpful.

The study showed that helping to better inform employers about epilepsy worked to dismiss some of the myths around the condition. The researchers concluded that online learning packages for employers could help with this. It would allow employers to gain a better understanding of the different aspects of the condition and how varied it can be.

Campaigns to help change attitudes around epilepsy were also suggested by the researchers.

Steps towards supporting people

Epilepsy can be a difficult condition to get to grips with. The unpredictability of seizures can make it difficult to speak confidently about it. While they may help, medicines don’t always fully control a person’s seizures. This can also add uncertainty. It is no surprise that people find it difficult to explain their experiences to a potential employer.

The fact that it is an often misunderstood condition will also come as no surprise. How much people know about it can vary, and sometimes people are still led by myths. All of these things can create challenges for people with epilepsy when trying to find a job.

Epilepsy Action has already been taking steps towards supporting people with epilepsy looking for work. The organisation offers a range of advice and information materials about epilepsy and work. It also regularly trains employers about epilepsy and the reasonable adjustments that can be made.

Plans for other resources, including online tools to help employers support people with epilepsy in the workplace, are currently being developed. Epilepsy Action also has the ‘Epilepsy and you’ online self-management tool. This was designed to help people live better with epilepsy and become an expert in their own condition.

Epilepsy Action also works to influence the government and other organisations. It aims to make sure they understand the needs of people with epilepsy. It also works towards making sure there is support with employment for people with epilepsy written into legislation. The charity will be continuing this work throughout the year and beyond.

If you’d be happy to share your experiences of work or employment issues (both positive and negative) with Epilepsy Action, please contact the campaigns team at campaigns@epilepsy.org.uk 

 

For more articles like these, become a member of Epilepsy Action and receive your Epilepsy Today magazine four times a year straight to your door, alongside other member benefits.

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