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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.

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 7 comments or add yours

Comments

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

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