Work and volunteering

Fast facts

• People with epilepsy can do most jobs with the right support and adjustments
• The type of work you can do may depend on how your epilepsy affects you, as well as your skills and experience
• If you don’t think it will affect your safety or ability to do your job, you don’t have to tell your employer about your epilepsy
• If you tell your employer about your epilepsy, the equality laws protect you from unfair treatment at work
• An employer should do a risk assessment if they know you have epilepsy
• An employer can legally refuse you a job if your epilepsy may be a risk for you or other people. This is only if they can’t make changes to make it safe
• If you don’t have a driving licence and can’t reach work by public transport, you might be able to get some help from Access to Work
• The Armed Forces are legally allowed to refuse to employ people with epilepsy. They will only accept people with epilepsy in extremely limited circumstances

Sadly some people have bad experiences with employers.

“

I’m 17 and haven’t had much success finding part time work. I’ve had feedback from interviews that I don’t have enough experience, but I think they don’t want me because of my epilepsy.”

“

I work in a kitchen. I had a focal seizure whilst carrying a knife and gave everyone a scare. Then they reduced my hours saying it would be better for me. I couldn’t afford my bills so I had to move back in with my mum.”

Support at work

• Once your employer knows you have epilepsy they should complete a risk assessment and involve you. If they identify any risks they need to think about possible reasonable adjustments
• Your employer should draw up a seizure action plan with you. This should include what support they should offer if you have a seizure. You can show them this seizure action plan template
• Keep your employer informed about what’s happening with your epilepsy. There is a much better chance they will support you well if they are ‘on board’
• If your employer wants to look at your health record, they need your permission. You can make it clear which bits you are willing for them to see, for example, just the bits about your epilepsy
• Your employer can only tell your colleagues you have epilepsy with your permission
• If you tell your colleagues about your epilepsy, you might find they’re less frightened about it and more supportive. Keeping something secret takes a lot of energy
• If you have a union rep, they may find the Trade Union Congress (TUC) guide written by Epilepsy Action useful
• Best practice says an employer should record any sick days separately from other sickness. You could ask for this to be done as a reasonable adjustment
• Tell your employer about the Epilepsy Action Employer toolkit to help them confidently support you at work

Reasonable adjustments

Reasonable adjustments are things your employer could do to help you at work.

Here are some young people’s experiences of reasonable adjustments:

“

My seizures are usually early in the morning. I agreed with my manager that I could start a bit later and have a shorter lunch break.”

“

I work alone a lot, at different sites. My employer provided me with a fall alarm and a security company responds if it goes off, or they call an ambulance.”

“

I work in retail. My employer changed some of my duties so I don’t do things that they think are too risky. For example, I don’t lock up by myself at the end of the day, I always lock up with someone else.”

“

I used to work night shifts, but I realised my seizures were triggered by tiredness. My boss helped me to change onto day shifts.”

There’s lots of other things your employer could do, such as alterations to the building, changing your workspace or giving you more time to do tasks. Many reasonable adjustments don’t cost anything. If there is a cost, your employer might be able to get funding from Access to Work to help pay for it. They should never ask you to pay.

Access to Work

Access to Work is a government scheme to help people with the costs of the support they need to help them work.

Epilepsy awareness training

If your colleagues would benefit from epilepsy awareness training, here’s some things that can help:

What to do when someone has a seizure – A free online course that shows different seizure types and first aid

In-person training – Epilepsy Action can provide tailored training for employers and colleagues

Show them the first aid page on The Epilepsy Space or Epilepsy Action’s website

The Employer toolkit

The Epilepsy Action Employer toolkit helps employers provide effective support to their employees with epilepsy. The website provides:

• Templates and examples including seizure action plans and risk assessments
• Information about epilepsy and different seizure types
• How to inform and talk about epilepsy with colleagues
• Videos of how to help during seizures at work

Read Paige’s experience of telling an employer she had epilepsy during a job interview.

Read how Michelle got the job she wanted as a Police officer.

Read about Rachel’s experience of work and epilepsy

Volunteering

Volunteering is a great way to get some work experience, develop your skills and help others at the same time. There are loads of different things you could do, depending on your interests.

Many universities and colleges have student volunteering opportunities. Contact your student support services to find out how it’s organised where you study.

Do-it UK lets you search for opportunities online. It will also help you find your nearest volunteer centre.

If you’re not working

How does your epilepsy affect the jobs you might do? Have there been any ideas on this page about support that employers might be able to offer, to help you find a job?

If you are working

Have you got the support you need at work to manage your epilepsy and do your job safely and effectively? If not, what else could you talk to your manager about?

More info