I, like everyone else, woke on Easter Sunday to the sodium valproate story breaking in The Sunday Times. I was intrigued and wanted to see how it was covered. The journalist Shaun Lintern is someone who I have long admired for all he does for patient safety – I know him to be fair and do a good job on all he covers.
Firstly, I was pleased valproate was getting the coverage it has long deserved. Once The Sunday Times article ran, other nationals picked up the story. Shaun did justice to the harms families have faced and the cover-up that has followed. Though for me, having worked on valproate for a number of years, I felt the article missed a beat.
Shaun himself told me that health authorities say valproate is an effective drug and that women should not stop taking it without consulting their doctors. He is right, and makes this point in the article. However, in the magnitude of what the article was covering, this felt like a drop in the ocean and the point was easily missed by those reading. I also had that sinking feeling I’ve known every time valproate hits the news – that women will back away from talking to others and their health care professionals when they are taking it.
I spent a lot of Easter Sunday pondering the article, before realising my heart and head had two different views, and that’s when it hit me – talking about valproate is like talking about a story of two parts, two sides of the same coin. One story does not lessen the other, nor does it diminish it.
So, what are these two sides? The first is the families that have suffered untold harm and the years they have spent fighting to even be acknowledged. The fact is that it is due to these families fighting for recognition that the conversations around valproate are happening and that things are changing. I am beyond pleased to see the recognition they are finally getting. The Cumberlege Review had recommended financial compensation to these families and, as I write, there has still been no sign of this. It is heinous that this drug was given to women without warning them of the potential damage. Financial compensation is the very least the government owe these women, and they should hang their heads in shame that they have yet to fulfil Baroness Cumberlege’s recommendations.
But then there’s a second side to the story. Valproate is now being compared to the thalidomide scandal, which is understandable, however women didn’t depend on that drug to live their daily life. This is the flip side to that coin, for all the damage valproate has done, it has also done a lot of good.
I speak as a former valproate taker. I thank those giant purple pills for allowing me to finish my degree and travel the world all those years ago, with a good level of seizure control. If you had tried to take them away from me at that stage, for children I hadn’t even considered having, I would have laughed in your face. I would not be giving up my seizure control for any fictional child. I was 21 and it was not in my plans. Adele, my epilepsy nurse, understood that. She still warned me of the risks but also knew it wasn’t right for me to come off the drug at that time. She did however change them later on when she realised I was in a serious relationship with my now husband. Whilst children still were not on the agenda, she told me accidents happen and she’d rather swap the meds now when I wasn’t planning children, than risk leaving the change too late. It was the best decision ever made for me.
You see for some, valproate is the only drug that allows them to lead a normal life. I have long championed that women should be given all the information and then be allowed to make their own decisions. Women have different paths in life and different needs, a blanket ban for all childbearing women is not always appropriate. Kim Morley, the UK’s only epilepsy midwife specialist, does incredible work around giving women a choice. She is a fountain of knowledge and her clinical experience of the subject is ever-growing. She champions women’s rights and is a shining light on what we should be aiming to achieve. Six babies a month are stillborn to mothers on valproate – that’s six too many. However, six is a huge reduction in the numbers we have seen in previous years. You also only have to look at the prescribing trends to see Valproate is becoming the last resort in the child baring age category. Those of us who have had our seizures controlled by valproate will never advocate for having a child on valproate, especially when there are other options.
A lot of work has been done to ensure valproate is not being prescribed in plain white boxes and that the information about risks is given out at the same time. Again, there are still times this is not happening. It isn’t ok that people are still slipping through the gaps, and we must keep fighting to ensure those women get all the information they need at the right time.
My fear when reading the article was those who are least likely to engage would step back even further from the conversation, for fear this medication would be snatched away from them. If you happen to be a woman living with that fear, I would say to you please reach out and have the conversations, as nobody is going to do anything without your consent. It is so vitally important that you have all information available to you.
So as more on valproate emerges in the coming days, please remember my words – valproate is a coin of two sides. The first, the awful harm caused and the cover-up that followed. The second, a drug that allows women to live their life. The good that has come from that flip side should be acknowledged, and at the same time all the information on risks must be available to women. All I will ever ask for is that women are given all the information and then given a voice. So rather than a gamble when that coin is flipped, women can firmly place it the side up they wish it to be.
- Faye’s Research Blog – a voice for women with epilepsy
- Kim Morley’s Research Blog – epilepsy in pregnancy in the clinic
- Dr Rebecca Bromley’s Research Blog – valproate in pregnancy: the value of research and patient campaigning
You can also watch Faye, Kim and Rebecca in our Research Roundtable webinar, where they joined us for a deeper dive into their various experiences in epilepsy and pregnancy, including impactful advocacy work, pioneering clinical practise and game-changing research.