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Telling people in the workplace about your epilepsy

The information in this section is about epilepsy and working in the UK. If you live outside the UK, you can find out about working and epilepsy in your country by contacting your local epilepsy group.

Once you have been offered a job, you don’t automatically have to tell your employer about your epilepsy. This is as long as you don’t believe it will affect your ability to do your job safely and effectively. This could be, for example, if your epilepsy is well controlled, or you only ever have seizures when you are asleep.

If you don’t tell your employer about your epilepsy and it does affect your ability to do your job safely, your employer may be able to dismiss you. To do this, they would have to prove that:

  • You have been given the opportunity to tell them how your epilepsy could affect your job and
  • You haven’t given them this information

If you are not sure whether to tell your employer about your epilepsy, here are some things to think about:

Reasonable adjustment

If your employer doesn’t know about your epilepsy, they can’t make any reasonable adjustments to help you.

Health and Safety at Work Act
The Health and Safety at Work Act (1974) is a law that says that all employers have to provide a safe workplace. They must protect all their employees from any possible danger to their health, while they are at work. As an employee, you also have a responsibility to take reasonable care of your own and other people’s health and safety at work. If your epilepsy could cause a health or safety risk to you or anybody else, you must tell your employer about it. This is the law.

More information about the Health and Safety at Work Act is available from the Health and Safety Executive (HSE)
Websites: hse.gov.uk (for England, Scotland and Wales); nidirect.gov.uk (for Northern Ireland)

Employer’s insurance

Your employer’s insurance may pay you compensation if you are injured at work, or if you become ill because of your work. If you don’t tell your employer about your epilepsy, you will not be fully covered by their insurance. So, you may not receive any compensation if you have an accident related to your epilepsy.

More information about employer’s insurance is available from the Health and Safety Executive (HSE)
Websites: hse.gov.uk (for England, Scotland and Wales); nidirect.gov.uk (for Northern Ireland)

When to tell your employer about your epilepsy

If you decide to tell your employer about your epilepsy, it’s useful to do it before you start the job. This gives them time to make any reasonable adjustments you need. If you don’t tell them about your epilepsy before you start a job, you can change your mind and tell them at any time. As soon as your employer knows about your epilepsy, they have to make any reasonable adjustment that could be helpful for you.

Telling people you work with

It’s your decision, whether you tell the people you work with about your epilepsy. But if you do, they will probably feel more confident about helping you if you have a seizure.

If you think it would help, you could ask your employer to arrange some epilepsy awareness training for your colleagues.

Epilepsy Action has information about epilepsy awareness training

Can my employer tell other people about my epilepsy?

Yes, if you give them permission, and sign a consent form. But they can’t tell other people about your epilepsy without your permission. This is to comply with the Data Protection Act.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B135.04

Epilepsy Action would like to thank Professor Sayeed Khan, Specialist in Occupational Medicine, Chief Medical Adviser to EEF, the manufacturers’ organisation and Judith Hogarth, Solicitor, Excello Law, for their contribution.

This information has been produced under the terms of The Information Standard.

  • Updated October 2015
    To be reviewed October 2018

Comments: read the 11 comments or add yours

Comments

after i had a blood clot on my brain in 2015. which left me epilepsy.And been in hospital many times with my fits.Lost my job twice because of my epilepsy.So been on the sick because the doctors can not get my tablets right .Over year gone by and my epilepsy not got better.The job centre say i am fit for work .I want to work.every job i been for i been turn down of my epilepsy.still having my fits day night.

Submitted by barry on

hi, my daughter started taking seizures in November. she got an mri scan, she has got a leision in her brain. she has to go back next month for another mri scan, to see if there is any change. she hasn't went out the door since then. she was on a training course to get ready for work as she just left school, but had to leave because of her seizures. what can I do to help her. plus where can she get help getting into work. thanks

Submitted by Theresa on

Hi Theresa
It sounds like you and your daughter are going through a really worrying time. It’s understandable if your daughter is feeling vulnerable and worried about going out since she started having seizures. Have the doctor’s given her any treatment for her seizures? Hopefully if the doctors can get her on the right treatment to help control her seizures, her confidence will increase over time.

If your daughter has been diagnosed with epilepsy, she might find it helps to talk to other people who understand what’s she’s going through. We have an online community called forum4e for people with epilepsy and their families. We also have coffee and chat groups to meet people face-to-face.

If your daughter is over 18, she might be able to get help with looking for work from a Disability Employment Advisor at your local Jobcentre plus. We have more information on our looking for work webpage. The government website also has information about help and support for young disabled people to find and stay in work.

I hope this helps. If you have any other questions please feel free to contact the Epilepsy Action Helpline.

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

I am 47 years of age and have suffered from Epilepsy Complex Partial Seizures for over 20 years. Was first diagnosed in my early 20s. Which started off as anxieties and palpitations with warnings. Now for the past 4 years have no warnings and have both seizures in sleep and awake. Condition is medically controlled but as these seizures come on as and when theyre ready to the meds only help to a certain degree.I have never allowed for my condition to get the better of me and have always made my employers aware of what it is I suffer from. And have been lucky to still get jobs. However I have since 2014 have had seizures every month to a higher or lesser degree and for the very first time ever my condition has been the cause of me losing my job as I had three seizures whilst at work all of which they called the ambulance for and each time once I came around still remained at work and carried on as usual. However received an email confirming that they terminated my employment despite the fact I asked if my job was safe. Their excuse was because they felt they do not have the right resources in place for my disability and felt it unfair for the staff I worked with to be worrying when my next seizure will be. So for the very first time I'm being made to feel my condition is unemployable.

Submitted by Angie Solomon on

Hi Angie
That sounds like a difficult situation for you. Hopefully you have been able to see from our information that there is a formal process your employer needs to go through.

Because you have epilepsy you are likely to be covered by the Equality Act. If your employer knows you have epilepsy, they have to do a risk assessment. If any risks are identified, they then need to consider any possible reasonable adjustments. So it really depends what you were doing, and how thoroughly they did consider reasonable adjustments.

If you do think you have been unfairly dismissed, then it would be a good idea to contact one of the organisations we have listed to get their opinion and then decide whether you want to take it any further.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Regards
Cherry
Epilepsy Action Helpline Team

Submitted by Cherry, Epileps... on

Thank you for your response. In addition I did make them aware of my condition by writing it down on the application form which referred to driving and I also verbally confirmed when I was offered the job. However in regards to workplaces making adjustments to make your working environment a safer place. My roles entails receptionist and office administration. When I've had seizures in the past I've been known to self harm myself with utensils like telephone receiver pencils pens rulers etc. As my job entails me using these objects it's hard for a working environment to be made safe. I have now been signed as unfit to work as over 14 days have suffered 6 seizures 2 of which were witnessed by my newly appointed work colleagues. Apart from not knowing what I do I also have to deal with the embarrassment as I unknowingly undressed and took my dress off. So whilst my seizures are being medically controlled if possible as I've been on tablets since I started suffering from this condition and all that has happened is meds being increased. So I will only be able to do part time vacancies because there may be a chance of working with another persons but that's only a maybe.

Submitted by Andrea Solomon on

I think it is absurd due to the Data Protection that an Employer does not have to disclose to work colleagues of anothers epilepsy. For safetys sake surely colleagues should know. From experience I have seen the shock and upset of unknowing staff, trying to help someone having a seizure and not knowing what to do. A very traumatic experience for all.

Submitted by Marie on

Hi I have been working on the roads for many years with no problems from employers. My epilepsy is well control no fits for 12 years. In April my job was transferred to another company who I gave full access to my records before the take over. This week nearly 3 months on I have been told I am unfit to do my job as the new company that have taken over the road maintainance contract say their company policy to work on the roads is you need to be able to pass a HGV medical.

Submitted by Gary yelland on

Hi Gary

I wonder why they want you to do that. Are you required to drive any large vehicles in your job? If so, then you may need to hold a Group 2 licence. However, they must be clear that everyone else meets the HGV criteria, not just you.

If you are not required to drive large vehicles, the company would need to be able to justify why they are asking for this. If they can’t offer a clear and reasonable justification then this may be an act of discrimination. You may want to see if you can get the requirement and its justification in writing.

If it then looks worth challenging, you could use our template letter to help with this. You could also ask them why you haven’t been considered unsafe during the last three months, and what has changed to make you unsafe now.

If you’re in a union it would be a good idea to be talking to them. For further help you may want to contact either ACAS the employment helpline. Their number is 0300 123 1100. Or the Equality Advisory Support Service. Their advice line is 0808 800 0082.

I really hope it’s possible to get it sorted.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

I have been working for my present employer since November 2017 and I based at capita call centre, doing call centre work.

I have mild epilepsy which is mostly well controlled, but I do get some minor absence seizures sometimes. When I had started the training
course in November 2016, I was told by the course trainer that I will need to have a occupational health assessment. Since starting in the call centre office in December 2016, I have had five managers in total and they have been made of my medical condition. Each manager that I have I have asked for a occupational health assessment and each one has promised this will be done. But a occupational health assessment has not been done.

I do sometimes suffer minor absence seizures in the workplace and had informed the previous manager that I do suffer from these. Is it a legal requirement for this to be done in the workplace? I would like to have a occupational health assessment for my own peace of mind.

I have informed the company hr department about my epilepsy. I am a member of a working union and I have thought about contacting them with regards to this because I am not happy with this situation.

From

Joanna Speakman

Submitted by Joanna Speakman on
Hello Joanna
 
This sounds like a challenging situation to find yourself in.
 
The decision to ask for a health and safety risk assessment at work is a very personal one. When deciding whether you want to ask for it to happen it can be worth thinking about what you would like to happen as a result of it. So, exploring things such as:
·         does your epilepsy impact on your work, if it does in what way?
·         What do you feel needs to happen which isn’t already happening?
·         Are there any reasonable adjustments which you feel your employer could make which may support you in your workplace?
 
A health and safety risk assessment can be a good way to explore these things with your employer and identify and reasonable adjustment they could make. It can also be useful to make sure that you are covered by their insurance if you were to have a seizure at work.
 
I have included some links to information on our website which I hope are useful. You may also find it helpful to take a look at our TUC guide. If you feel your managers do not agree with your request for a risk assessment then this may support you and your union representative to talk it through and take action.
 
If we can be of any more help, please feel free to contact us again.
Karen
Epilepsy Action Advice & Information Team
Submitted by rich on