Many people with epilepsy are just not aware of some of the opportunities now available to them in helping to manage their epilepsy better. Often people become so used to the way that their epilepsy affects them that they stop looking to improve their situation.

In most cases however, it is wrong to think that things cannot get better. The Take Control campaign has been launched to provide people with epilepsy with information and resources to help them work closely with their doctor to ensure their epilepsy is managed in the best possible way for them.

The campaign aims to help people realise that things change constantly in health care and medicine – and epilepsy is no exception. It may be that asking the doctor a few specific questions will help both the person with epilepsy and the doctor to make the right decisions together. It may be that a newer epilepsy medication could provide better control of their seizures or that treatment side effects could be better managed. It may also help to be in contact with a patient support organisation which can provide information and advice.

The campaign aims to help everyone with epilepsy in the UK. Most of all, it aims to reach people who are not currently receiving such information, and therefore are least likely to be receiving the best possible treatment and care.

Included in the full Take Control pack is the Take Control Action Card, part of which is a seizure diary that will help record the frequency of seizures, and assist patients to discuss their condition with their doctor.

To be sent a full Take Control pack, please either call our Freephone Helpline on 0808 800 5050 or contact our Email Helpline staff at:

helpline@epilepsy.org.uk

Taking action to improve services

In May 2002 the National Sentinel Clinical Audit on Epilepsy-Related Deaths was published. The audit highlighted the fact that, of the 1000 annual epilepsy-related deaths, 400 were potentially preventable through improved health care services. The government’s own Chief Medical Officer called for urgent action on the audit.

The Department of Health finally published an Action Plan in February 2003. Unfortunately, the Plan didn’t set any targets for improvement, didn’t offer any specific epilepsy-related initiatives and didn’t offer any new funding to improve services. Epilepsy Action believes that this plan will fail to reduce the number of epilepsy-related deaths or deliver any service improvements for epilepsy care.

Without targets, epilepsy-specific improvements and funding, epilepsy services will continue to provide inadequate health care for people with epilepsy. Epilepsy Action is therefore seeking an improved Action Plan and has invited the Department of Health to work with it to find a better way forward.

We are asking all people with an interest in epilepsy to lobby their local health services, their MP, the Health Minister and the Prime Minister, calling for a real Action Plan that will improve epilepsy services and reduce the number of bereaved families. Tools to help people in this can be found on our website:

www.epilepsy.org.uk/action

Women’s Campaign

Over the past five years, Epilepsy Action has run a series of women’s campaigns to raise awareness of the particular issues facing women with epilepsy and how their treatment may affect the following areas: contraception, fertility, pregnancy and the menopause.

The aim of the campaign was to establish some of the main issues affecting women with epilepsy and to ensure greater awareness of these amongst health professionals and women with epilepsy.

This is done on an on-going basis through mailings, leaflets, web information and national/regional press and radio. Epilepsy Action wants all women to be able to make informed choices about their epilepsy care

1999 – “We Can” campaign – Epilepsy Mine

A survey was carried out amongst Epilepsy Action members asking them to describe what it is like to be a woman with epilepsy. A booklet of women’s personal experiences of living with epilepsy was produced.

2000 – Contraception campaign

The aim of this was to raise awareness that certain AEDs can interfere with oral contraception, making it less effective. Articles were placed in regional press and women/family magazines, encouraging women

2001 – Get Ahead

This focused on teenage girls and the specific issues that can affect this age group (e.g. fertility, contraception and independence). ‘Factsheets’ were produced and a teenage section of Epilepsy Action’s website was also developed.

2002 – Ideal World

We carried out a survey of Epilepsy Action members, which identified three lifestages.

On the back of this factsheets were produced to provide women with information to help them make informed decisions about their treatment and care.

A checklist was also created for GPs and epilepsy specialists to ensure that they were discussing all the key areas of concern with their female patients.

2003 - Women Matter

A patient booklet was produced, containing information for women with epilepsy and a number of discussion points for women to raise with their health professional. The booklet also included spaces for women to write their thoughts and comments.

A letter and mailer were sent to GP practices to encourage greater awareness of the specific issues that need to be addressed when caring for women with epilepsy.

2004 – Contraception Week

A series of radio interviews took place during national contraception week to highlight the interaction between AEDs and contraception.