Introduction

Epilepsy Action was set up in 1950, and since then the Association has changed dramatically, but our aim is still the same - to raise awareness of epilepsy. It is not too many years ago that people with epilepsy were routinely locked away in institutions, barred from marriage and generally treated as undesirable. Thankfully things have changed and continue to change, but not quickly enough!

Epilepsy Action is a membership organisation and is one of the largest epilepsy membership organisations in the world. Our members include people with epilepsy, their families and friends and the health professionals who care for them. Our members give us a voice - one which is listened to with increasing respect by medical organisations, government departments and service providers.

In recent years Epilepsy Action has been involved with campaigns to change driving law, to bring in guidelines for education authorities when dealing with children with epilepsy, to provide cheaper and fairer insurance schemes and many more. Epilepsy Action was actively involved at consultation stage for the Disability Discrimination Act, ensuring that people with epilepsy were represented and that their problems were addressed.

Changing the law is difficult but changing attitudes is a real challenge. Myths are hard to kill, and our members’ experiences demonstrate that, for some people, epilepsy is still something to fear and avoid. Education is the strongest weapon against this kind of attitude and Epilepsy Action works extremely hard to tell people the truth about epilepsy. Every week thousands of publications are sent to people’s homes, their schools and offices and to doctor’s surgeries and hospitals, all aimed at destroying the harmful myths that have dogged people with epilepsy down through the centuries.

People with epilepsy sometimes say that other people’s attitudes are the hardest part of having epilepsy. They learn to cope with having seizures. They get used to taking daily medication. But nobody should have to get used to losing friends, jobs, college places etc. just because other people can’t handle seizures. Epilepsy Action wants everybody to be able to recognise epileptic seizures, to know what to do and what not to do. Epilepsy Action wants a world where those of us with epilepsy can get on with living our lives, freed by quality health care and understanding.