Living with epilepsy

If you are diagnosed with epilepsy, you may feel that life has completely changed. You may have lost some self-confidence and feel anxious about having further seizures. Of course it is important to be sensible and not take unnecessary risks. It is equally important to live your life as fully as you did before the epilepsy, only avoiding activities that could be dangerous if you had a seizure. 

Here are some suggestions to help you with day-to-day living.

• Consider telling other people about your epilepsy and how to help you if you have a seizure.
• Consider carrying an epilepsy identity card or wearing identity jewellery. 
• Consider what safety precautions you may need to take, for example when cooking or bathing.
• If you live in the UK, consider asking your local Social Services to assess your needs for any special aids or adaptations to make your home safer.
• If you live alone, find out about the special alarms that are available to alert someone that you need help. You may need to pay for an alarm yourself, or you may be able to get help with the cost from Social Services (if you live in the UK).

‘In Case of Emergency’ scheme (ICE)

This is a scheme that helps medical staff to quickly find out who they can contact in an emergency situation. This could be, for example, if you have had a seizure and are having difficulties telling people.

On your mobile phone contact list, enter the word ICE in front of the name of the person you would like to be contacted. ICE stands for In Case of Emergency. If you want to put more than one emergency contact, you can use ICE1, ICE2, ICE3 and so on.

Entitlements

This information is about entitlements for people with epilepsy in the UK. If you are looking for information about entitlements in another country, please contact your local epilepsy organisation.

Here are some things that all people with epilepsy are entitled to.

• Free medical prescriptions
• A Disabled Person’s Railcard
• Free bus travel at certain times of day, if you are not allowed to drive because of your epilepsy (see below). This is just for people who live in England, Scotland or Wales.

If you are under 65, you may be entitled to Disability Living Allowance. This would be if you have care needs or need help getting around, because of your epilepsy.

If you are over 65, you may be entitled to Attendance Allowance. This would be if you have care needs because of your epilepsy.

If you spend at least 35 hours a week caring for another person, you may also be entitled to receive Carer’s Allowance.

• More information about entitlements for people with epilepsy in England
• More information about entitlements for people with epilepsy in Scotland
• More information about entitlements for people with epilepsy in Wales
• More information about entitlements for people with epilepsy in Northern Ireland

The Equality Act

This information is relevant for people who live in England, Scotland and Wales

If you have epilepsy, there is a law to protect you from unfair treatment. This is called the Equality Act (EA).

The EA can help you in areas of your life such as health and social care, employment, and access to goods, facilities, transport and services. It means that people should not treat you unfairly, just because you have epilepsy.

Employers and providers of goods, facilities, transport and services should also make reasonable adjustments for you. This is to make sure that you are not put at a disadvantage to a person who doesn’t have epilepsy. Some examples of reasonable adjustments are making changes to buildings or premises or providing equipment that will help you.

• More information about the Equality Act

Driving

This information is about driving in the UK. If you are looking for information about driving in another country, please contact your local epilepsy organisation

If you have a seizure, you do have to stop driving. If it is your first ever seizure, you will need to stop driving for a minimum of six months. If you have had more than one seizure, you can drive again when you have been seizure-free for at least 12 months. You can also drive if you have only ever had seizures in your sleep for at least three years, even if you’re still having them.

• More information about driving

If losing your driving licence means that you have difficulties getting to work, you may be able to get some help through a scheme called Access to work. You can get more information about this from your local Jobcentre.