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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 16 comments or add yours

Comments

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

my son is an un controlled epileptic currently on ESA benefit Wrag group and Disability benefits. H e has previously had telephone intervention because of this but a new advisor insists he should go into the office.
He should really be in a support group but in order to achieve this we have to show that he and others are in danger.His consultant has written to say that he is a danger to himself and others but I am told this is insufficient evidence.
How can I do this?
at the

Submitted by june cunningham on

Hi June

Many thanks for this email. This sounds like a frustrating situation to be in. As we are not specialists in welfare benefits, the information I can provide you may be limited. For ESA, the limited capability for work assessment assesses both physical and mental disabilities. They will review a person’s ability to do a number of activities. A person will then, as you have described, be placed in a work related group or a support group.

In exceptional circumstances, even if a person has not passed the limited capability for work related activity assessment, there is one other way someone may pass it. This is by getting information from a healthcare professional which says one of two circumstances apply to them. These rules can be complicated and the support of your doctor is vital.

You have said that your consultant has written to the Department for Work and Pensions (DWP) supporting your son’s application. This is the evidence suggested by the DWP themselves so should be sufficient. If you are not happy with their decision, you have the right to appeal. It may be beneficial to you to get support for this from a specialist welfare benefits organisation.

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

Yours sincerely

Karen
Epilepsy Action Advice & Information Services Officer

Submitted by Karen@Epilepsy ... on

Hi i currently have grand mal epilepsy ive just started a new job and have not told my employer and have signed papers saying that i dont have any medical conditions ive been controled well over 5 years i hold a current drivers license and have still been rejected by employers when ive notifed them now that ive beeninjured at work due to having a seizure just a accident and worried about my employer finding out about my epilepsy what should I do

Submitted by brad on

Hi Brad

Thank you for your comment. We have heard of others who had their epilepsy under control but then had seizures in the first few weeks of starting work. We often wonder if this could be due to the stress and tiredness people can experience when starting a new job.

It would be advisable for you to talk to ACAS. They offer free advice about employment rights. You can phone them at telephone 0845 747 4747.

Your employer’s medical questionnaire should have only asked if you had a medical condition that would affect you at work.

The medical questionnaire should only be used to see if there are any reasonable adjustments that may be needed if the condition will affect you at work. If you don’t tell employers about your epilepsy, and it does affect your ability to do your job safely, employers may be able to dismiss you. To do this, the 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

There will be situations where if your epilepsy was well controlled at the time, and you believed it wouldn’t affect you at work, you wouldn’t have to say you have epilepsy.

It would now be advisable for you to meet with your employer and explain about your epilepsy. Between you both, you should do a risk assessment. From this assessment there may or may not be any reasonable adjustments needed to keep you in work. But if there is, they should put them in place. Reasonable adjustment can be for a short period whilst your epilepsy settles again.  Having a care plan can be a good idea. The information can include what happens when you have a seizure and how people can help you during and afterwards.

Keep your employer informed of any changes to your epilepsy which could have an effect on your work. Make a note of these conversations and of any changes to your working conditions that are made as a result. This would be useful if your work situation became really difficult and you needed to raise a grievance.

If safety to you and others in the workplace is a problem and there are no reasonable adjustments only then could your employer dismiss you.

I hope all works out alright for you. If possible please do let us know things go.

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

Regards
Diane Wallace
Advice and Information Team

Submitted by Diane. Epilepsy... on

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