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This article was published in January 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

Epilepsy and pregnancy survey: counselling is not happening

8 Jan 2013

Woman's pregnant bumpAs part of a new campaign that launches today, Epilepsy Action has released the results of a survey of women living with the condition. The survey results show that a concerning number of these women have not been properly informed by their healthcare professionals. Vital facts about epilepsy and pregnancy are not being given – facts that may help ensure the safety of both mother and child.

Preconception counselling is when a medical professional explains a variety of things to a woman of child-bearing age. These things include changes in seizure patterns during pregnancy and the harmful effects that some epilepsy medicines may have on an unborn child.

National guidelines state that all women with epilepsy of childbearing age should receive counselling on conception, contraception and pregnancy. Only if the risks are properly explained can a woman make informed choices about her epilepsy care. It is essential that all efforts are made to reduce these risks before and during pregnancy. Unfortunately, this does not appear to be happening in all cases.

Survey results

Pregnant woman opening gifts at a baby showerAlmost 500 women with epilepsy from across the UK took part in Epilepsy Action’s survey. Of those, 204 women have been pregnant in the last five years or are currently planning a pregnancy. However, over a quarter (26 per cent) of those women said they had not received information and counselling about pregnancy.

Almost half of those 204 women (49 per cent) said that their healthcare professionals had not given them information about possible changes to their seizure pattern during pregnancy. Epilepsy medicines can become less effective during pregnancy because of changes in the body, such as hormone levels. This might lead to breakthrough seizures in women whose seizures are controlled.

Meanwhile, over a quarter of those 204 women (28 per cent) had not received information about the risks of taking certain epilepsy medicines during pregnancy. Some medicines may carry risks to the unborn baby – for example, some can lead to malformations.

Pregnancy campaign

The Pragnancy diaries front coverThe new Epilepsy Action campaign aims to raise awareness of the potential risks of epilepsy and epilepsy medicines during pregnancy. The campaign is called HealthE mum-to-be and has been launched with a range of useful and practical resources, both for expectant mums and their health professionals.

A new magazine-style publication aims to inform all mums-to-be of the potential risks that their doctors may not have mentioned. The one-off magazine is called the Pregnancy diaries. It features the stories of six mums with epilepsy, charts their pregnancies and outlines the ways in which they dealt with their epilepsy.

The Pregnancy diaries will also be sent out to medical professionals throughout the UK to help them become aware of what expecting mums with epilepsy should know. Midwives and obstetricians will also receive a resource pack including lots of information to help them keep mums-to-be up to date.

One of the Pregnancy diaries writers is Clair Cobbold. Clair was diagnosed with epilepsy at the age of 19 and had her first child (a daughter – Riley) in June 2012. Clair says: “When I found out I was pregnant, I was worried about how my seizures and anti-epileptic medication might affect my baby. I found thinking about having a baby, pregnancy, labour and looking after a baby when you have epilepsy, all very daunting. The most important things for me were health professionals understanding these concerns and hearing other mums’ experiences, knowing you are not alone. That’s why I’m supporting Epilepsy Action’s campaign.”

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