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Issues in the workplace

Key points

  • An employee with well controlled epilepsy (not having seizures) is unlikely to be off sick any more than other employees
  • People with epilepsy are unlikely to need long-term sick leave because of epilepsy
  • Lots of people with epilepsy are very open about their condition, but it is their choice who is told
  • People with epilepsy have a higher risk of problems such as depression and anxiety

Time off for medical appointments

Not all people with epilepsy will need the same amount of time off. An employee with well controlled epilepsy (not having seizures or having very few seizures) might not have any more medical appointments than other employees. An employee who is newly diagnosed with epilepsy might have more appointments for tests.

There is no legal requirement to offer paid time off for medical appointments. Some employers include the arrangements they support in their employees’ contract of employment. For example, a contract might state whether this time off will be paid or unpaid. It might also state that appointments should be scheduled outside work hours where possible, or the time is booked as holiday leave or made up at a later date. Make sure you know what policy your organisation has in place, and if there are any contractual obligations to meet.

Employees with epilepsy are protected by the equality laws. Whether paid or unpaid, there is a legal obligation to allow reasonable time off work for medical appointments in connection with a person’s disability. As an employer you might make a reasonable adjustment to allow extra time off for medical appointments

Be clear about the processes for time off for medical appointments

Sickness absence

In most cases people recover from a having a seizure quickly or with short period of rest. If an employee with epilepsy needs time off to recover from a seizure, they can self-certify this time off up to 7 calendar days. If the employee is off sick for more than 7 calendar days, then a fit note from a doctor should be provided. An employee may return before the end of his or her fit note, but this needs to be in agreement with the employer. For example, the employer may request that the employee stays on sick leave until the end of the fit note if the employer cannot make the required adjustments.

Returning to work

Most employees with epilepsy should be able to return to work following a seizure as soon as they feel well enough. There is no requirement to be signed back to work, and there’s no option on a fit note for a doctor to do this.

Some employers have a policy requiring medical evidence to support an assessment of fitness to work. Providing medical evidence in relation to fitness to work is not a free NHS service. If you want to ask for information about someone’s epilepsy to support an assessment of fitness for work, it needs to be requested privately from a GP, an epilepsy specialist or occupational health specialist and is a fee paying service.

Recording sickness absences

Keeping a record of sickness absences is good practice for all employers. It can help to identify any patterns and the causes of absence.

An employee with well controlled epilepsy (not having seizures) is unlikely to be off sick any more than other employees. For an employee that still has seizures, the need for time off work will depend on the type of seizures they have and the time they need to recover. If an employee has had a recent diagnosis, there will be a period of adjustment. It will be a change for both employee and employer. It can take time to come to terms with a diagnosis and the effects this might have. It may also involve time off work due to seizures or medical appointments.

It’s helpful for sickness records related to a disability to be noted separately from time off for other reasons (such for a cold or flu). Recording this way will show how much sickness absence is due to epilepsy. You may want to consider if a reasonable adjustment would help with epilepsy-related absences. For example, if a sickness review is usually triggered after a fixed number of periods off, it might be constructive to review things differently for an employee with epilepsy.

Saleem
I need regular hospital appointments during my usual working hours. My work does their best to accommodate them. They also log my epilepsy sickness separately from sickness for other reasons. This means my sickness record doesn’t look too bad.

Long-term sickness absence

People with epilepsy are unlikely to need long-term sick leave because of epilepsy.

It might be necessary for an employee to have a longer period of time off if they have been seriously injured because of a seizure. Some people have brain surgery to treat their epilepsy and will need time off to recover. A period of absence might also be needed if their epilepsy or treatment has changed.

If an employee has taken a period of long-term sick leave, the plan for their return to work should be done on an individual basis. If necessary, there are several options (or a combination of options) that might be put in place such as: altered hours, amended duties, working from home, or a phased return.

“Evidence shows that keeping in touch with people who are on extended periods of sick leave can help them feel supported, valued and more confident about returning to work.”

NICE (National Institute for Health and Care Excellence)

Sick pay

The arrangements for sick pay depend on an employee’s terms and conditions of employment. Make sure you know what the policy at your organisation is for company sick pay (CSP) so you are clear of any contractual obligations. Company sick pay may also be called contractual sick pay. If If there is no CSP provided, employees might be eligible for statutory sick pay (SSP). To check eligibility for SSP there is guidance available for employers about statutory sick pay. 

An employee with epilepsy should not be treated less favourably than other people without epilepsy, as that would be discrimination. There is no automatic obligation for an employer to extend company sick pay beyond the usual entitlement. Yet when a worker is absent due to disability-related sickness, an employer could consider whether it would be reasonable for them to do so.

Managing sick leave and time off

Watch this video of Grace from the Epilepsy Action helpline talking about managing sick leave and time off for medical appointments.

Other health conditions

Having another health condition alongside epilepsy is common.

  1. Epilepsy is more common in people with a learning disability than in the general population
  2. Attention Deficit and Hyperactivity Disorder (ADHD) happens more frequently in people with epilepsy
  3. Studies have found that people with epilepsy are more likely to have an Autistic Spectrum Disorder (ASD) than people without epilepsy
  4. People with epilepsy are more likely to be affected by depression or anxiety

So some employees with epilepsy may also need support at work related to other health conditions.

More information about support at work for other health conditions:

Mental health issues

It is estimated that 1 in 4 people experience a mental health issue in any given year. For people with epilepsy there is a higher risk of problems such as depression and anxiety.

1 in 4 people experience a mental health issue in any given year

A workplace culture that supports people’s mental wellbeing is good practice. Anything that is put in place to support mental health is likely to benefit all employees. If there is nothing specific already in place to support mental health at your organisation, there are options you could consider.

“Around 60–70% of people with common mental health conditions such as depression and anxiety are in work.”

Resources about mental health that might be of interest:

“There are significant benefits to a healthy workforce. It can improve productivity, business performance, staff morale and employee engagement.”

Telling colleagues

It’s up to the person with epilepsy who they choose to tell about their epilepsy.

There are good reasons for people to be open about having epilepsy, but it is their choice. Some people feel anxious or prefer not to tell other people about their epilepsy, especially if they have had a negative reaction in the past. Other people may see no reason to tell colleagues, particularly if their seizures are controlled.

Many people choose to be open about their epilepsy. This is often because it raises awareness of epilepsy and they feel safer when people know what to expect and how to help if they have a seizure.

The wishes of the person with epilepsy should be respected, when it comes to who is told

If your employee is unsure about if or how to tell colleagues, we have created a checklist of things to consider when telling people about epilepsy at work.

Case studies

Daniel
When I first joined, I did a presentation to my colleagues about my seizures, and epilepsy. I explained to them when first aid is needed, how to treat me, what to do, what not to do. When there’s a new starter I have a sit down and chat with them to explain my condition and what to do. I’m always reinforcing the stuff.
Erin
In the past, I’ve managed to go long periods of time without having a seizure. When I started a new job I wasn’t sure about disclosing my diagnosis. In the end, I told them because of safety. I knew that a seizure could still strike at any time. I have tonic-clonic seizures and felt somebody should know what to do if I had one at work. It’s also likely I would have told my colleagues about my epilepsy eventually as there’d be no other way to explain the occasional black eye or thick lip.

Negative perceptions and stigma

In a survey into public attitudes about epilepsy, the majority of the people surveyed had a positive or very positive view of epilepsy. People said they would not be concerned by working with someone with epilepsy. They had very positive attitudes about people with epilepsy being able to work full time and be successful at work. The biggest concern that survey respondents had about people with epilepsy at work was around safety.

However, epilepsy can be a very misunderstood condition that can be associated with stigma. This is often based on a lack of understanding and fear. People with epilepsy can worry about how others will see them. It can also be frustrating if they hear the same myths or incorrect assumptions about epilepsy repeatedly. It can make it seem like other people simply do not understand.

If other employees treat an employee with epilepsy in a way that makes them feel uncomfortable, it could be harassment. If the behaviour is in relation to an employee’s epilepsy and makes them feel offended, intimidated, or humiliated, then it might be unlawful disability discrimination under the equality laws. UK equality laws exist to protect people from discrimination, harassment and victimisation. As an employer you have a legal duty to protect employees from harassment.

Signs of workplace bullying, harassment or discrimination may be tricky to spot. More information about signs of bullying at work:

Epilepsy awareness training

Providing epilepsy awareness training in the workplace is a practical way to raise awareness and give other employees an understanding of epilepsy.

Epilepsy Action provides face-to-face and online training for organisations. Get in touch to find out more.

Erin
The one thing that I hate is the presumption that if you have epilepsy, it’s going to be photosensitive epilepsy. There was an instance at work when a group photo was being taken and in front of the whole staff, somebody said, “Are you going to be okay with a flash Erin?” It left other people thinking why wouldn’t she be okay with a flash? And I felt kind of exposed.

Career progression

People with epilepsy in the workplace are often underemployed; working in a job that does not make full use of their talents or potential. Some people with epilepsy may lack confidence and not put themselves forward for the chance to progress. If stress is a trigger for their seizures, they might be reluctant to put themselves forward for opportunities to develop or for promotion.

Employers may avoid pushing employees if they think it will create additional stress and because they want to be a supportive employer. In research undertaken by Epilepsy Action, people with epilepsy said they did not want to be treated as if they were in an overly protected ‘bubble’. They said they wanted to ‘get on’ with their jobs.

If there are opportunities for progression, consider what support and encouragement could be given to help people to reach their potential.

Maria
For me, if anything, the only thing that ever triggered my seizures was monthly hormones. But work had got it in their heads that stress can trigger seizures. Because of that they were scared, that high-profile projects would be too much pressure for me. They had an attitude of we can’t give her any tight deadlines or anything high priority to do. I had a hard time trying to explain to a middle-aged man that actually it was my monthly hormones not stress affecting my epilepsy. As a result, I didn’t stay there very long because I was just constantly overlooked for opportunities.
Daniel
People with epilepsy are as capable as anyone else. Don’t judge people on their epilepsy, judge them on what they can do.

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