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‘Worrying’ lack of knowledge on epilepsy drugs in pregnancy


Almost half of women with epilepsy are unaware of the risks of taking epilepsy medicine sodium valproate, according to a new survey by three leading UK epilepsy charities.

More concerning, they said, was that 20% currently taking it did not know the drug could, in some cases, harm the development and physical health of their unborn child if they became pregnant.

“Healthcare professionals need to be supported with the time and tools to help women”

Ley Sander

More than 2,700 women with epilepsy took part in the survey, which was conducted by Epilepsy Action, Epilepsy Society and Young Epilepsy.

It revealed that 27% of respondents who were currently taking sodium valproate had not had a discussion led by their healthcare professional about the risks involved in pregnancy.

The charities are now calling on the Department of Health to continue to support efforts to ensure that all women are aware of the risks, and are able to make informed decisions about their care.

They said it was “imperative” that healthcare professionals were given the time and resources to make sure these conversations happen.

Sodium valproate (branded as Epilim, Epival, Episenta, Convulex and Orlept) is currently the third most-prescribed epilepsy medicine.

“Health professionals need the time to chat with their women patients”

Emma Friedmann

According to the Medicines and Healthcare products Regulatory Agency, up to four in 10 babies are at risk of developmental disorders if sodium valproate is taken during pregnancy and one in 10 are at risk of being born with a birth defect.

The agency also states that women and girls of child-bearing potential should only be treated with sodium valproate if nothing else works.

The MHRA launched a toolkit in February this year to help healthcare professionals, including nurses, talk to women with epilepsy about the risks involved during pregnancy.

It features a credit card-sized patient card to be issued by pharmacists, booklets for healthcare professionals and women taking sodium valproate, and a checklist of important discussion points.

The MHRA has also produced a learning video, available on youtube, for primary care staff to encourage them to review their female patients on valproate and to make sure they were aware of the risks of taking the medicine during pregnancy.

Professor Ley Sander, medical director of Epilepsy Society and professor of neurology at University College London Institute of Neurology, said: “These figures highlight a pressing need for women to have the right information about all aspects of pregnancy and the risks linked with sodium valproate.

“The MHRA strengthened the warnings last year on the risks of sodium valproate in pregnancy,” he said. “Pre-conception counselling is essential to ensure women and girls with epilepsy are fully informed of the risks associated with pregnancy.

University College London Hospitals NHS Foundation

Nurses ‘must have time’ to discuss valproate risks

Ley Sander

“Healthcare professionals need to be supported with the time and tools to help women have these important conversations,” said Professor Sander.

He added: “The toolkit is an invaluable resource to open up the dialogue with patients to help them make an informed choice and manage their care before, during and after pregnancy.”

Emma Friedmann, a campaigner from the group FACSaware, which supports more information on fetal anti-convulsant syndromes, said: “This research identifies that there is a worrying lack of knowledge over epilepsy medicine risks in pregnancy.

“Much more needs to be done to make people aware of the potential dangers of taking sodium valproate, the third most prescribed anti-epilepsy medicine, when pregnant,” she said.

“Health professionals need the time to chat with their women patients, ideally at the six monthly or annual medication review, about the risk of harm to the foetus, alternative parenting options, changing medication and contraception,” she added.


Readers' comments (2)

  • It would be helpful to break down these figures and find out if the lack of knowledge is more prevalent in areas where there are few or no epilepsy specialist nurses. Where nurses exist, caseloads are huge and knowledge levels vary. The prescriber/initiator of these drugs should bear the responsibility initially, as part of what should be normal information sharing between prescriber and patient when initiating a treatment.

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  • I took Valporate in pregnancy 17 years ago. I knew the risks (the information leaflet supplied with the medication clearly states these risks) and asked my GP to refer me to a neurologist to discuss my options. My GP received a very rude letter back stating that I had been seizure free for years and therefore he was refusing to see me. He completely refused to see that myself and my GP were concerned about the risks associated with valporate which have been known and been in the information leaflets for over 20 years and in the BNF for even longer. I was informed by my GP in 1982 when I first started the medication that I might have to change medication if I wanted to get preganant. My son is disabled, thankfully not severly but the neurologist insisted that the risk was very small, even though I knew it was greater than he said. I believed him because he was the specialist. I wished I had listened to myself.

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