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of everyone affected by epilepsy

Campaign highlights risks for women with epilepsy and calls for better standards of care

29 July, 2003

Poor epilepsy knowledge amongst some health professionals means that many women with epilepsy still face an unacceptable increase in risk of unplanned pregnancy and having a child with birth defects.

New research released to launch Epilepsy Action's 'Women Matter' campaign shows that only 15 per cent of doctors' practices surveyed are currently offering essential pre-conception or contraception counselling for women with epilepsy. Epilepsy Action is calling for greater awareness and a dramatic increase in the availability of counselling for women with epilepsy.

Some anti-epileptic drugs (AEDs) interact with the contraceptive pill, potentially resulting in unplanned pregnancy. Informed counselling, with an understanding of the options available, should be an automatic part of treating women with epilepsy. This is an important issue for most women with epilepsy of childbearing age. Also vital is information on the increased risks to the unborn child when taking certain AEDs. Growing evidence shows that older epilepsy drugs in particular increase this risk. Women taking two or three AEDs face a greatly increased risk to women not taking drugs.

Some women with epilepsy also face an increased risk of polycystic ovary syndrome, potentially leading to reduced fertility, as well as having to deal with the impact of drug side effects like weight gain, acne and facial hair. A good partnership between healthcare professionals and women with epilepsy can both reduce the risks and work towards a better quality of life.

Kathy Bairstow, Senior Advice and Information Officer at Epilepsy Action, commented:

"While every woman's case is different, it is clear from talking to our members that many women are currently taking inappropriate treatment and are unaware of the risks they face as a result of poor management. In the past six months, over 300 calls have been made to Epilepsy Action's helpline, specifically on women's issues."

The Department of Health recently published an Epilepsy Action Plan, acknowledging problems with epilepsy services and listing initiatives for improving care. While the plan has generated overdue attention on the issues faced by people with epilepsy, Epilepsy Action is concerned that it fails to provide measurable targets or provide specific epilepsy funding for the NHS. Further, new research conducted for the Women Matter campaign has found that only 13 per cent of family doctors surveyed had read the Epilepsy Action Plan.

Philip Lee, Epilepsy Action's Chief Executive, said of the campaign:

"Women Matter is about setting minimum standards of care that all women with epilepsy should expect. We believe that people with epilepsy should be partners in the management of their own health. There are still too many women who are not receiving adequate care and vital information, they deserve better".

Epilepsy Action's campaign is being supported by a range of organisations and individuals committed to improving care for women with epilepsy. Professor Mike Kerr, Consultant Psychiatrist and adviser to the campaign said:

"Knowledge about epilepsy and the various treatments used to control epilepsy is increasing all the time. This means that women should now have choices in their treatment options, however it seems that many women are not being involved in these decisions. If women are unhappy or feel unsure about their current treatment, I would advise them to seek a review of their condition and treatment options".

As a final note of caution, Professor Kerr stressed that women with epilepsy should not stop taking their current medication without consulting their doctor or epilepsy specialist first.

"Seizure control is of paramount importance in the management of all people with epilepsy and particularly during pregnancy. By stopping taking medication without the advice of a healthcare professional, women could be putting themselves at further risk."