26 March is the international day for epilepsy – known as Purple Day. Epilepsy Society’s mission for Purple Day is to start conversations about epilepsy.
Starting conversations and sharing stories is so important for people with epilepsy and their loved ones. Often epilepsy is a hidden condition and for a variety of reasons people might not talk about their epilepsy. This can make people feel isolated and leave them in the dark about drug options, treatment choices, practical support available to them and much more.
This lack of openness and information is endemic in the history of the drug Sodium Valproate (commonly known as Epilim). Back in 2017, I wrote about the European-wide safety review into Sodium Valproate.
Earlier this year healthcare professionals, including GPs and pharmacists, were reminded to identify and review all women who are taking Sodium Valproate. For many years it has been known that Sodium Valproate increases the risk of a baby born to a mother taking it suffering physical abnormalities and cognitive impairments. Babies exposed to Sodium Valproate in the womb have a 10% chance of developing physical abnormalities and a 4 in 10 chance of developing cognitive problems, such as learning disabilities and autism. Evidence of this risk emerged back in the 1980s, but for years many patients have not been told about the risk.
Even now recent data showed a wide variation in prescribing practices across the UK. Many women are simply not being given the information they are entitled to and the opportunity to discuss the options with their doctor, which puts their unborn child at risk.
Medical professionals are under a duty to take reasonable care to ensure that patients are aware of the material risks involved in recommended treatment and of all reasonable alternative or variant treatments. There are so many different drug and non-drug options now available, so plenty to consider as alternatives to Sodium Valproate. A significant risk is one that would affect the judgment of a reasonable patient. A 10% risk of a baby developing physical abnormalities and a 25% risk of cognitive problems is surely a significant risk that doctors should make all patients aware of so that they can make their own decision about their life and that of the future child.
By starting conversations about epilepsy, we can share information about the condition, how it affects us and issues such as Sodium Valproate. A friendly chat about epilepsy could lead to a woman taking Sodium Valproate learning about risks she didn’t know about and taking steps to protect her unborn child.
So, take the plunge and start the conversation on 26 March. I’ll start the ball rolling a few days early by talking about my epilepsy.
As the saying goes, sharing is caring!
Further information
If you have any questions relating to this ebriefing or epilepsy care, please contact Ann Houghton who will be happy to speak to you on an initial free, no obligation basis.
Epilepsy Society offers a confidential helpline which provides information and emotional support for anyone affected by epilepsy 01494 601 400 and helpline@epilepsysociety.org.uk
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