Lauren Toal: Understanding epilepsy in the workplace

I have been living with epilepsy for the past twenty years and have been lucky enough to be seizure free for the past eleven. Currently, I work within an organisation which openly supports colleagues with disabilities, although I have had some very different experiences in the past.

Previously, I’ve worked in other organisations that haven’t been supportive of my epilepsy, to the point where I was sacked by an employer after having a seizure. There was also a massive lack of awareness and understanding of what epilepsy is and how it impacts people.

I’ve been asked before if people can catch epilepsy! It’s a hidden disability and there’s a lot to do in terms of understanding in how they can support someone with this neurological condition.

Being able to work in a hybrid environment is crucial for someone who has epilepsy. When you have a seizure, it severely impacts you physically, mentally and emotionally so having the ability to recover and work from home is really beneficial. It’s also important for employers to take into account seizures when it comes to absences.

Every diagnosis of epilepsy is different from person to person

One of the main triggers for seizures when I was younger was stress at school and sleep deprivation, so if you have an open dialogue with your line manager you can understand how best to manage stress and working patterns that can support your health.

There are a number of charitable organisations which can support employers and really, it’s about having a conversation about what epilepsy is and how it manifests and what they can do to support their employees.

What is epilepsy?

Epilepsy is a condition that affects the brain. This means anyone with the condition will have a tendency to have epileptic seizures. There are over 40 different types of seizures known as epilepsy. The seizures are different in type and severity for everyone.

Seizures usually last a short time, and the brain works normally between them. Some people find their seizures are triggered by certain things, such as not getting enough sleep or skipping a meal, consuming alcohol or being stressed. Some people with epilepsy may only experience seizures while they are awake and fully aware, or some people have seizures during their sleep. This might mean the seizure takes the form of an unusual taste or smell. Some people with epilepsy may have seizures where they fall down and lose consciousness.

Whilst there are many drugs and therapies available, 30% of people live with uncontrolled seizures that do not respond to medication. The impact on families and carers can be significant, especially if they face the challenge of managing round-the-clock care which can be mentally, physically and emotionally tough.

A small proportion (around 4%) of people with epilepsy are photosensitive. This means that visual stimuli such as flickering lights and computer games can trigger seizures.

Employing a person with epilepsy

It is important to consider their individual situation and base any decisions on fact. This means looking at their epilepsy and the effect it might have on their work. Talking to them about what their epilepsy is really like, and how it might affect their work, is more helpful than making assumptions about how it affects them.

About their epilepsy

• What type of epilepsy do they have?
• Do they have seizures? What are their seizures like, how often do they happen and how do they affect them?
• Do they have any warning before a seizure (sometimes called an aura)?
• Do they lose consciousness, and how does this affect them?
• Do they need an ambulance to be called and is there someone who can do this for them?
• How long do they need to recover from a seizure? Some people can return to work quickly, while others may need more time.
• Are their seizures brought on by anything, such as tiredness or stress?
• Do they take medication to control their seizures and how does this affect them (they may feel tired or find it hard to concentrate)?

Asking health-related questions

Under the Equality Act 2010, employers are not allowed to ask questions about an applicant’s health in any written form or in an interview, until the applicant has been offered a job, or has been placed in a pool of successful candidates to be offered a job.

An exception to this is where you can ask applicants health-related questions in relation to the recruitment process. For example, you can ask whether applicants have any specific requirements to enable them to attend an interview.

When the role has been offered

Once a role has been offered, you can ask questions about a disability if that will help you put any necessary reasonable adjustments in place.

Reasonable adjustments

Under the Equality Act 2010, employers are required to make ‘reasonable adjustments’ so that a person with a disability is not at a disadvantage compared to someone without a disability.

You can ask about an employee’s health if it helps you to make reasonable adjustments. If you ask questions that are not relevant to the job, or you use someone’s health as a reason for dismissing them, this could be discriminatory.

Not everyone with epilepsy will need adjustments and any that are needed will vary, depending on the person’s needs.

Adjustments that may be helpful to consider for someone with epilepsy include:

• Offering hybrid working timescales
• making their workspace safer in case they have a seizure
• avoiding lone working, so that someone else can help if they have a seizure
• exchanging some tasks of the job with another employee’s tasks
• adapting or providing equipment or support to help them do their job
• time off for medical appointments that is separate from sick leave

One of the most valuable things for me has been finding an organisation who understands and helps me to manage my symptoms in a way thats right for me. Organisations who are focussed on a work-life balance, promote flexible working and champions family-friendly policies and positive mental health change people lives. This should in noway be underestimated.