Epilepsy Action urges Health Secretary to rethink sodium valproate redress scheme position

6 May 2022

Epilepsy Action has written to Health Secretary Sajid Javid, urging the government to implement the recommendations of the 2018 patient safety review into the drug sodium valproate.

NHS Digital reported last month that valproate prescriptions fell by over 7,000 from April 2018 to September 2021.

While Epilepsy Action welcomed this development, the organisation is still concerned about the lack of progress on other recommendations around the sodium valproate scandal made by the Independent Medicines and Medical Devices Safety Review. These include appointing a Patient Safety Commissioner and creating a network of specialist centres to support people with epilepsy during pregnancy.

The organisation is also calling on the government to reconsider its decision not to provide a redress scheme for the families affected by the scandal.

Sodium valproate was launched in the the 1970s, and there have been concerns about its safety if taken during pregnancy on patient information leaflets as early as 1974. Taking the medicine in pregnancy can increase the risk of learning and physical problems in babies. However, it is also an effective epilepsy medicine, and may be the only medicine that works for some women.

Epilepsy Action believes women should be given an informed choice about using this medicine. However, the patient safety review, carried out by Baroness Julia Cumberlege, found that women had not been made aware of the risks of this medicine for many years.

In the review’s report, “First Do No Harm”, Baroness Cumberlege acknowledged the “intensity of suffering” families have experienced because of this, and the fact that it was due to “failings in the health system”.

Epilepsy Action told the Health Secretary that the organisation remains “disappointed that the government has rejected the recommendation to establish a redress scheme. This is essential for families who have experienced avoidable harm associated with sodium valproate and pregnancy, and to meet the cost of providing additional care and support.”

You can find out more about the issue, and read the letter sent to the Health Secretary, and download a letter to send to your own local MP on the Epilepsy Action website.

 

It’s important not to stop taking your medicines without the advice of your doctor, as this could cause harm to you or your unborn baby. If you are worried about your medicine and pregnancy, you should speak to your doctor.

 

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Valproate prescriptions reduce between 2018-2021

New figures show that the number of women prescribed sodium valproate in a month fell by over 7,000 between April 2018 and September 2021.

Comments: read the 1 comments or add yours

Comments

As a woman taking Epilim for the last 20 years and being seizure free, this is bad news as spent most of my 20s in a blur with frequent seizures as cocktails of different anticonvulsants were tried, until I started these magic purple pills.
I have got my life back through Epilim and don’t care if I’m on it for the rest of my life.
Please don’t put my seizure free life at risk by forcing the NHS to maybe withdraw this medication.

Submitted by Michelle
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