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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.

Telling your employer about your epilepsy

Once you have been offered a job, you don’t 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, your employer would have to prove that:

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

If you don’t know whether or not to tell your employer about your epilepsy, here are some things to think about.

Reasonable adjustments
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 or 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 Health and Safety Executive (HSE). Websites: hse.gov.uk (for England, Scotland or 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 the employer time to make any reasonable adjustments for you, if they are needed. If you don’t tell your employer 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 adjustments that could be helpful for you.

Your employer should not tell other people about your epilepsy, unless they have your permission. This is to comply with the Data Protection Act. If you do agree to let work colleagues know, you should sign a consent form. This gives your employer permission to tell one or more named people. 

Telling people you work with about your epilepsy

It’s up to you if you want your colleagues to know about your epilepsy. Bear in mind that if people know about your epilepsy, they will usually 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 training for your colleagues. The aim is to increase awareness and understanding of epilepsy. Contact Epilepsy Action for more information.

Care plans for seizures in the workplace

If there is a chance that you will have seizures at work, it is a good idea to prepare a care plan with your employer. The information can include what happens when you have a seizure and how people can help you during and afterwards.

The information that is collected in a risk assessment can be very helpful when preparing your care plan. Here are some examples of things to include in your care plan.

If you usually recover quickly after a seizure, you might be able to return straight to work. Or, you might just need a quiet place to rest before returning to work. The care plan should say where this rest should take place.

If your recovery after a seizure usually takes a long time, you might need to go home. The care plan should say how you will get home and who will travel with you, if necessary. This should be in line with company policies and procedures for anyone becoming unwell at work. 

 

If you would like to see this information with references, visit the Advice and Information references section of our website. See Work and epilepsy.


Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
Code: 
B135.03

Epilepsy Action would like to thank 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 November 2013
    To be reviewed November 2016

Comments: read the 15 comments or add yours

Comments

I work in a Gp Surgery, Receptionist, I do lone working, apart from the Gp, who is through another room with a code on, past corridor and in her own room seeing patients. I recently did not feel well, left reception as did not want to have fit in front of patients, got to office and had the fit, I was found by the Nurse, who only works one long day, she also had a patient in, I had broken my wrist, the Ulna and Radius. Had surgery and been off 3 months, I am due to go back in 2 weeks. I have asked for adjustment so someone is in office during the late afternoon. They are suggesting I could alert the GP when I don't feel well? As I don't always get an aura, I have got evidence from my GP and Nurse Specialist saying I should not work alone. Also most of my fits are afternoon. Advice if you can please. Thanks

Submitted by Pat Kirwan on

Hi Pat

This is a difficult one because it depends on whether it is reasonable for the practice to have someone in the office in the late afternoon. Could you contact the Epilepsy Helpline freephone 0808 800 5050, so we could discuss this fully.

Kathy

Advice and Information Team

Submitted by Kathy on

I returned back to work today, having had a meeting with my manager who has referred me to Occ Health, she has also sent for reports of my health to GP. Atmosphere very bad. Temporary measures put in for lone working. I have asked for a fall alarm which connects to GPS phone (my employer). She has mentioned a panic button, I think this will be one you press. Can I disagree with this? Also a risk assessment has only been in routine building in the past, not for me and my circumstances. I have asked for one. Can I get an independent one? I did in my old employment. Thanks Pat.

Submitted by Pat Kirwan on

Hi Pat

It sounds like the work situation is still difficult.

Your employer has to consider reasonable adjustments. These should be discussed with you and ideally a compromise reached between you.

A risk assessment has to be about you and your circumstances. If you are not happy with the one that your employer is doing and need to challenge that, it may be possible to get an independent risk assessment.

For more specific advice about your rights at work and possible discrimination you may want to contact ACAS or the Equality Advisory Support Service.

I do hope everything works out for the best for you.

Cherry

Advice and Information Team

Submitted by Cherry on

Okay so I just recently started a new job and I told them before they hired me about my epilepsy. Well I ve been seizure free for months now but ended up having a grand mal last week at work. My recovery is long and I had to stay home the next day. My question is should I just quit my job and go on disability? I've been let go because of my seizures from my 2 previous jobs and I think this is going to be number 3. Three strikes I'm out...

Submitted by Janice Glass on

Hi Janice

Having a seizure at work does not need to be a reason to leave work. Here is some basic information about work and epilepsy. If it would be easier to talk this through, please feel free to ring us on our freephone helpline number, 0808 800 5050.

Because you have epilepsy you are covered by the Equality Act. As 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 depending on the work you are doing, it may or may not be easy to for your employer to suggest reasonable adjustments to keep you and everyone else safe at work.

In terms of time off sick, it is good practice for an employer to log any time off sick because of your epilepsy, separately from other time off work. So you could ask them to do this as a reasonable adjustment. But the law doesn’t say they have to do it.

If you think your employer is not behaving fairly, the first thing to do is to look at the terms and conditions of your contract. This will give you information about how to take out a grievance procedure.

For more information about employment rights, contact ACAS. For more information about possible disability discrimination, contact the Equality Advisory Support Service . We also have links to other useful sources of information and advice.

But it is worth thinking carefully before you leave a job. This is because why and how you do this would influence whether you are paid any benefits or not. Make sure you get advice from someone like a Citizens Advice Bureau, or the benefits website and helpline Turn2us, before you make any decisions.

I do hope it works out okay for you.

Cherry

Advice and Information Team

Submitted by Cherry on

Hi, I suffer with grand mal seizures and often have fits at work, due to having to be sent home from work on several occasions I have been given a formal warning and told by a manager I should not be working with my fits. As if this was not bad enough due to the work patterns I have medication stored in work and have recently had my tablets go missing on more than one occasion and my managers are refusing to do anything about it, is there anything I can do?

Submitted by martin on

Hi Martin

Sorry to hear of your work situation. As there are a few different issues going on, I think we could help you most be speaking with you, rather than trying to help you on the website. If you would like to do that, please contact the Epilepsy Helpline freephone 0808 800 5050, and we will talk about your concerns with you.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

Hi,
I am 23 years old and was diagnosed last year with epilepsy, I also suffer with gynaecological problems since around the age of 11/12. I work in a pharmacy so you would expect some compassion but work has been bad in terms of me having time off due to my medical problems, including me undergoing 2 operations one in 2012 and one in 2013 - my manager wanted me back the next day! I've had a couple of grand mal seizures at work and they didn't have a clue what to do as the manager at the time didn't care and she never got a risk assessment done for me, or a care plan, so it resulted in my head hitting concrete floor several times. I recover slowly from my seizures and unfortunately can sometimes lose bladder control and due to the gynae problems doctors have been trying new medication for that which unfortunately interfered with my epilepsy and caused a lot more seizures.
I'm currently off work for the week on a sick note from my GP but I know the atmosphere will be awful going back. My GP is having to refer me to a psychiatrist because of how depressed I am. The pharmacy I work in has 5 other members of staff and none of them show me any kindness.
I'm currently awaiting to undergo procedures to try and find out the gynae problems as my hospital has just passed it off for over 10 years, and pushed pills on to me, but as a lot of people on here know - it takes ages to get anywhere with hospitals.
I am in real risk of losing my job, and have been made well aware of that. The way I'm treated when I return to work doesn't make it any easier in fact the stress and how upset it makes me actually increases the risk of seizures. I have become so down and depressed that I've considered suicide as I don't know how much more I can take. That probably sounds very dramatic but I'm at my wits end and I can't see and end to these problems. I just don't know what to do anymore. My mum tells me not to do anything stupid and there are so many people who love me, but even she doesn't understand the hell it is living with epilepsy and to be treated like dirt because you have a medical condition that I can't help and didn't ask for. I don't want to lose my job, can they do that?

Kirsty

Submitted by Kirsty on

Hi Kirsty

This must be a very tough time. As you have seen on this webpage, you are covered by the equality laws. From what you describe it seems your employer has not fulfilled their responsibilities to you in many ways. There are some situations where an employer can legally not employ someone because of their epilepsy, but it is unlikely that work at a chemist’s is such a job. You will need to get advice on how your particular situation is relevant to the equality laws, and what your next steps should be. The Equality Advisory & Support Service on 0808 800 0082 is a good place to start, followed by ACAS on 0300 123 1100, to advise you on how to handle relations with your employer.

With all that’s happening to you it is understandable that you have been feeling depressed. It’s important to seek medical attention for depression, and your referral to a psychiatrist is a good first step. There are also support organisation that can be helpful, such as the Samaritans, with their helpline on 08457 90 90 90, and the Depression Alliance, with their support network. Also, some epilepsy medicines can be a factor in depression. You might want to talk about this with your epilepsy specialist or epilepsy nurse, as it could be that an adjustment to your epilepsy medicines might help. Our page on epilepsy and depression has more details which might help.

I hope things improve soon.

Sacha
Epilepsy Action Advice & Information Team

Submitted by Sacha@Epilepsy ... on

Hello

I gave birth in April and suffered pre-clampsia and eclampsia which resulted in 3 seperate seizures, never had a seizure before. Because of the timescale of the third seizure the hospital said it was "probably" epilepsy although they could not confirm or deny and I am now taking 500mg Keppra morning and night. I work as a legal assistant in an office, not alone, my employers have told me they will not allow me to return to work unless they have a report from a consultant regarding my health, they have already spoken to my doctor. Is this normal procedure??

Thank you

Kerry

Submitted by Kerry on

Hi Kerry 

Thanks for your question. What your employer is asking for does seem unusual, whether or not you have epilepsy. It might help to contact ACAS for advice about your situation, to learn if this is an acceptable practice. It’s unclear whether or not you have a diagnosis of epilepsy. From a legal standpoint it’s important to know this, because if you have epilepsy then you are covered by the equality laws. This would have implications on your relationship with your employer.

Our knowledge of preeclampsia and eclampsia is limited, but seizures are a common symptom of eclampsia. The best thing to do is to talk to you GP about if your seizures were related only to the eclampsia, or if they could be epilepsy related. If they suspect epilepsy, then a diagnosis would be the next step. You also might want to ask if you still should be taking epilepsy medicine. If you do not have epilepsy then you could be taking it unnecessarily.

I hope things start to improve soon for you.

 

Sacha
Epilepsy Action Advice & Information Team

Submitted by Sacha@Epilepsy ... on

Hi Sacha

This is the issue, I have spoken to my doctor and the neurologist and neither will confirm 100% I have epilepsy which is frustrating as, like you said, I could be taking medication I do not need to, I have also had my licence revoked. I am seeking a second opinion with Professor John Duncan so I am hoping it will be confirmed either way.

Thank you for the ACAS recommendation, much appreciated.

Kerry

Submitted by Kerry on

This may sound petty just that I feel offended. I've had epilepsy since birth (MRI showed) although I was 13 before I had first fit, so just over 30 years. I've had every type of fit going but luckily pretty much controlled and can't see it effecting work. But, they say they need to do risk assessment, understandable, but I need to prove it. I have taken in my medication with name on, I got a Medipal card done to alert people, I've even seen nurologist this year that they saw letter for but they want a letter off my doctor!

Do I have to get letter and prove it? I really am massively offended. Feels like back at school 'I'm very sorry but sharon can't do PE today because.....'!

Sharon

Submitted by Sharon on

Hi Sharon

I can see why you might feel offended. That sounds like a situation which hasn’t’ been handled as well as it could be.

Your employer does need to do a risk assessment. And in order to do that, they need to make sure they have clear and accurate information about your situation.

If you and your employer feel there are risks, and you are wanting them to make reasonable adjustments, then it is certainly in your interest for your employer to be as clear as possible about your medical condition.

If the letter you showed the employer was only for an appointment, then it may be worthwhile just to get a letter confirming your diagnosis from your GP. I understand it must feel irritating, but if it serves the purpose, then it’s probably worth your while.

I do hope you are able to resolve it in a way which means you can just get on with your job.

Cherry
Advice & Information Team

Submitted by Cherry-Epilepsy... on

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