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Charities call for better advice over epilepsy drug risk during pregnancy

  • Almost half (48%) of women with epilepsy are unaware of the risks of taking epilepsy medicine sodium valproate
  • 1 in 5 (20%) women currently taking the drug do not know it can harm the development and physical health of their unborn child should they become pregnant
  • Charities are urging healthcare professionals to talk to women and girls with epilepsy about pregnancy and the associated risks before they conceive

Almost half (48%) 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 is that 1 in 5 (20%) women currently taking the drug do not know it can, in a minority of cases, harm the development and physical health of their unborn child should they become pregnant.

Carol Long, Chief Executive of Young Epilepsy, said:

Epilepsy continues to be a ‘Cinderella-like’ condition and it is important that women who may be planning to have a family receive the right advice at the right time; to prevent their unborn babies being put at risk.

Sodium valproate can provide life-changing support for many young people with epilepsy. It is the third most-prescribed anti-epilepsy medication, however, the percentage of women who do not know the risks of taking the drug during pregnancy is far too high. That information must be made clearer, and medical professionals must be given more support to understand and be proactive in flagging the risks. Women must feel more empowered to discuss the issue with their epilepsy specialist, so that they can make a more informed decision about their future.

More than 2,700 women with epilepsy took part in the survey, conducted by Young Epilepsy, Epilepsy Action and Epilepsy Society. The survey revealed that just over a quarter (27%) of women who responded, and are currently taking sodium valproate, had not had a discussion led by their healthcare professional about the risks involved in pregnancy.

Alison Paterson, 37, was diagnosed with epilepsy after she developed a brain tumour just weeks after giving birth to her first son James in 2012. After unsuccessfully trying various epilepsy medicines, she was eventually prescribed sodium valproate which controlled her seizures straightaway. Her consultant made it very clear that she should not get pregnant while taking the drug as it could damage her unborn baby. She was advised to wean herself off the medicine for a year before conceiving and to take folic acid. Eighteen months later, she found out she was pregnant and gave birth to Alastair in July 2015.

She said:

The advice and treatment I received enabled me to have a relatively straightforward pregnancy and give birth to my healthy son. I was shocked to hear the results of this survey. Every pregnancy carries risks, but for women with epilepsy they really need to be aware of the potential risks before they conceive

The Medicines and Healthcare products Regulatory Agency (MHRA) recently launched a toolkit to help healthcare professionals talk to women with epilepsy about the risks during pregnancy. The toolkit 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 charities say it is essential that healthcare professionals talk to women and girls with epilepsy about pregnancy and the associated risks before they conceive. They 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 supported to make informed decisions about their care. The organisations say it is imperative that healthcare professionals are given the time and resources, including the MHRA’s toolkit, to make sure these conversations happen.

Sodium valproate (often known under brand names such as Epilim, Epival, Episenta, Convulex and Orlept) is currently the third most-prescribed anti-epilepsy medicine. According to the MHRA, up to four in 10 babies are at risk of developmental disorders if sodium valproate is taken during pregnancy and one in 10 babies are at risk of being born with a birth defect. Women and girls of child-bearing potential should only be treated with sodium valproate if nothing else works.

Toolkit

More information on epilepsy and pregnancy

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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