Why I Created the Sodium Valproate Knowledge Hub
Sodium valproate has been part of my life for more than fifty years.
I was prescribed it as a child with epilepsy, in 1975, when it was being hailed as a wonder drug for epilepsy. Despite this, my neurologist, at that time, did not want to give it to me. I was not privy to these conversations; these decisions were being made for me. Sodium Valproate did not control my epilepsy, nothing did.
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Later my care was moved to a specialist hospital. This was at a time when neither I nor my family could possibly have imagined the part this medicine would eventually play in my life. My parents had expressed concerns regarding the side effects, In those days a doctor had your complete trust, in those days, in speaking out against my neurologists choices, my parents were taking a strong stance. My neurologist explained that this was the drug for epilepsy that could not be controlled.
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For many years, I thought about sodium valproate in a very simple way. It was a medicine I needed because I had epilepsy. Like many people taking long-term medicines, I trusted that the benefits and risks were understood and that, if something important changed, somebody would tell me.
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I never imagined that decades later I would be looking back through its history, trying to understand not only what happened to my daughters, but what long-term treatment may have meant for me too.
My daughters have Fetal Valproate Spectrum Disorder (FVSD), caused by exposure to sodium valproate during pregnancy. Understanding what happened to them changed the way I looked at this medicine completely.
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But the more I learned, the more I realised that the story of sodium valproate is much bigger than pregnancy. My time in the European Medicines Agency than the Medicines Health and Regulatory Agency, helped me to put it into perspective, to understand how it is used and why, which meant I began thinking about it had effected me, and later how medication had effected my health.
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It is a story about how medicines are studied, how risks are recognised and communicated, how prescribing changes over time, and what happens when somebody takes the same medicine for years or even decades.
It is also a story about information.
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What was known? When was it known? What were patients told? What were doctors told? And what happens when pieces of information exist, but nobody brings them together?
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Sodium Valproate has been greatly researched, some of this research is contradictory, some information gets lost, some of this has been hidden. This makes me sound as if I am coloured by personal experience to hate this medicine. The truth is no medicine is safe, and this does work for some, but it did not work for me. This is an important medicine for many reasons, I hope that these pages, and the blog will help to consider that medicine is a complex field, and sodium valproate is a red flag that is still blowing in the wind.
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Those questions are why I created the Sodium Valproate Knowledge Hub.
Why I Created the Sodium Valproate Knowledge Hub
Sodium valproate has been part of my life for more than fifty years.
I was prescribed it as a child with epilepsy, at a time when neither I nor my family could possibly have imagined the part this medicine would eventually play in my life.
For many years, I thought about sodium valproate in a very simple way. It was a medicine I needed because I had epilepsy. Like many people taking long-term medicines, I trusted that the benefits and risks were understood and that, if something important changed, somebody would tell me.
I never imagined that decades later I would be looking back through its history, trying to understand not only what happened to my daughters, but what long-term treatment may have meant for me too.
​
My daughters have Fetal Valproate Spectrum Disorder (FVSD), caused by exposure to sodium valproate during pregnancy. Understanding what had happened to them changed the way I looked at this medicine completely.
But the more I learned, the more I realised that the story of sodium valproate is much bigger than pregnancy.
​
It is a story about how medicines are studied, how risks are recognised and communicated, how prescribing changes over time, and what happens when someone takes the same medicine for years or even decades.
It is also a story about information.
What was known? When was it known? What were patients told? What were doctors told? And what happens when pieces of information exist, but nobody brings them together?
Those questions are at the heart of why I created the Sodium Valproate Knowledge Hub.
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Looking Back
It was during lockdown that, like many other people, I had time to stop and think about my own health and medicine history.
By then, I had twice experienced being prescribed medicines at too high a dose for long periods of time. I began to wonder: how could this have happened?
I have always wanted to know why something happens and how it happens. Who, what, when, where, why and how are important words for me. They are simple questions, but sometimes asking them changes the way you see something completely.
I started looking at the side effects of the medicines I had taken and thinking about my health journey as a whole. Symptoms and health problems that had previously seemed separate began to raise questions. I wanted to understand whether there could be connections that had simply never been considered.
Most of all, I wanted to understand how this could happen in this day and age, with all the information, research and systems that we have around medicine safety.
So I began putting the pieces together.
Questions Lead to More Questions
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The work of the Independent Medicines and Medical Devices Safety Review was clearly important. It asked questions that had not been asked before and brought together the experiences of patients and families whose voices had too often been unheard.
But within that story I could also see anomalies, signposts and questions that still needed answers.
For me, these were not reasons to dismiss what had already been discovered. They were reasons to look more closely.
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One piece of information would lead me somewhere else. A date would raise another question. Something in the history would make me wonder what information had been available at that particular time, what patients had been told, or how prescribing decisions had been made.
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I kept coming back to those same basic questions:
Who? What? When? Where? Why? How?
And the more I looked, the more I realised there was still more to understand.
That is what made me keep digging.
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Why a Knowledge Hub?
The Sodium Valproate Knowledge Hub grew out of this process.
In many ways, it was a reaction to what I was finding. I needed somewhere to bring information together, explore different ideas and follow questions wherever they led.
I did not create it because I had all the answers. Quite the opposite. It became a way of exploring what I did not understand.
Some questions led into the history of sodium valproate and how prescribing had changed over time. Others led towards pregnancy, long-term treatment, side effects, how the medicine works and the developing science behind it. Sometimes apparently separate subjects began to connect. At other times, what I found simply raised another question.
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The Hub gave me a way of separating these different strands while still being able to look at the bigger picture.
Importantly, it also gave me a way to share what I was finding.
I don't expect everyone who visits the Hub to follow the same path that I have. Some people may be looking for straightforward information about sodium valproate. Others may be trying to understand their own treatment, pregnancy exposure, long-term health or the science behind the medicine.
My hope is that the Knowledge Hub gives people somewhere to explore these subjects for themselves, follow the information that is relevant to them and, perhaps most importantly, ask their own questions.
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I am stiill Asking Questions
The Sodium Valproate Knowledge Hub is not intended to provide every answer. I don't think we have every answer.
It reflects a journey that is still continuing.
As new research emerges, historical information becomes available and our understanding of sodium valproate develops, there will inevitably be more to learn and more questions to ask.
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For me, that is the important part.
Medicine safety should not only be about what we know today. We also need to be willing to look backwards, examine how we arrived here, recognise the gaps in what we know and remain curious about the things that do not quite fit.
Who? What? When? Where? Why? How?
Those questions started me on this journey.
The Sodium Valproate Knowledge Hub is my way of continuing to ask them — and of sharing what I find along the way.