Epilepsy at work: nothing to fear

Would you know how to discuss health and safety at work with a colleague who has epilepsy? Would you, or any other staff members, know what to do if they had a seizure? How do you communicate disabilities, or ‘invisible’ conditions like epilepsy, to the rest of your team?

Epilepsy is one of the most common serious neurological conditions in the UK, affecting one in 100 people. But there are gaps in understanding, as well as age-old stigma, which can influence how people are treated at work – and if they even get into work at all.

National charity Epilepsy Action recently launched a new toolkit for employers to support staff with epilepsy and to improve understanding in the workplace. It includes templates to provide support, assess risks and talk about epilepsy.

The aim is to promote open dialogue, so that an employee can explain their condition and an employer can give confident, tailored support and make reasonable adjustments. The toolkit also describes a range of different seizure types, along with practical first aid videos explaining what to do if someone has a seizure – see: employers.epilepsy.org.uk

Epilepsy is characterised by seizures. There are around 60 different types of seizure and someone may have more than one type. Some people remain aware throughout, while others can lose consciousness. Many people’s seizures can be controlled by medication and do not interfere in their working day.

For others, seizures are unpredictable and can cause things such as memory loss, fatigue and anxiety. The side-effects of medication and other treatments can also impact on someone’s daily life, but can be easier to manage with the right support. The condition fluctuates and varies from person-to-person.

The consequences of an epilepsy diagnosis can be severe. Diagnosis for some can result in the loss of education, independence, income and employment. But a lack of understanding and fear of the condition can be just as damaging, especially in the workplace.

A recent YouGov poll showed that 26 per cent of people would be concerned about working with someone with epilepsy, with 63 per cent not knowing how to respond if a colleague had a seizure. On the other hand, 76 per cent of people have not been offered any training on how to deal with a colleague suffering a seizure. This partly explains why the disability employment gap in the UK affects people with epilepsy so acutely. Of the 600,000 people in the UK living with epilepsy, only 34 per cent of people of working age are in employment – see: bit.ly/3sJjWKp

In reality, there are very few jobs that someone with epilepsy cannot do. Furthermore, helping them to feel safe and supported at work need not be difficult, dangerous or costly. Open dialogue is key to getting the ball rolling. Once an employee discloses their condition, you can create a seizure action plan with them.

This will let colleagues know what to do if they have a seizure at work, where they can rest and for how long, and who to call. Some people get a warning before a seizure, but many do not. Some people recover quickly from seizures and can resume work that day. Other people might take longer to rest and need to go home. A seizure action plan will outline the best response to these situations, in line with standard company policies and procedures for anyone who becomes unwell at work. 

As soon as managers are aware of an employee with epilepsy, they should also carry out a health and safety risk assessment looking at the way seizures may affect them. Reasonable adjustments might include changing someone’s workspace and equipment, or changing their hours or shift patterns. It could involve making meetings and documents more accessible, or sending key discussion points over email. Relatively minor changes and tailored support can make a big difference, helping someone to reduce their seizure triggers, such as stress and tiredness.

Improving staff attitudes in the workplace towards colleagues with epilepsy, as with all kinds of conditions, is also vital. It promotes a culture of acceptance which can be felt by everyone.

You could start with a very general focus on wellbeing at work, more timely than ever during the Covid-19 pandemic. This can open up new discussions about people’s physical or mental health struggles and create a more level playing field. You might find staff actively want to talk and raise awareness, which can in turn encourage others to find out more about conditions like epilepsy. If team leaders support a person-centred approach and new ways of communicating, it can be a huge boost to staff safety, health and morale.

The Epilepsy Action employer toolkit, and further advice on epilepsy, are at:

employers.epilepsy.org.uk

Claudia Christie is Media officer at Epilepsy Action

Ryan’s story

I had my first tonic-clonic seizure when I was 21 and was diagnosed with myoclonic epilepsy.

I really struggled a lot in the early years with my diagnosis. My memory isn’t how it used to be and it’s been that way since my first seizure.

Even though my epilepsy is with me for life, I have found it difficult to accept at times. I’ve worked since I was 16, mainly in warehouse/factory work. I’ve found when I mentioned my epilepsy to my colleagues or my employer that it’s met with shock, because I look no different to them. Even though my epilepsy is controlled with medication, I have still been ‘let go’ in numerous jobs, and I know it’s because of my epilepsy, even though it’s never been directly said.

I’ve worked at my current employers, Print Foundry Lab, for about six months now. I didn’t tell them about my epilepsy at interview, but I decided to tell them about it recently following a phone call from my GP regarding a medication check-up.

I chose this moment to tell my production manager. He was really understanding and wanted to know more. They have since printed out a guide about how to deal with tonic-clonic seizures, which they’ve put up on the factory floor and in the offices. I find it really reassuring to know that they have accepted me and my epilepsy. They want to understand more and always make sure I’m ok. We have regular meetings and I get feedback on my work. They are interested in me as an individual and I feel part of a team. I feel really valued.

I think it’s important to tell your employers what kind of epilepsy you have. The Epilepsy Action toolkit is really useful to help open up those conversations. There are many different kinds of epilepsy and explaining yours to your employer means they can act straightaway if a seizure happens.

It hasn’t always been easy and I have thought about not declaring my epilepsy to anyone. But I wouldn’t be true to myself and I don’t want to keep anything back when I’m proud to be me and knowing what I overcame after having my first seizure at 21.