Valproate and Foetal Anticonvulsant Syndrome

James Frith Excerpts

Thursday 19th October 2017 Commons Chamber

[James Frith (Bury North) (Lab)]

I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this important debate, which I hope will compel change. I also join colleagues in putting on record my thanks and admiration for the FACS Association founders, Emma Murphy and Janet Williams, who are here today. Emma and Janet are an inspirational pair who have turned their life-affecting experiences as victims of this syndrome, and their knowledge of victims of it, towards justice on the issue and the demand for better knowledge of the risks that sodium valproate poses to our unborn children.

I speak as someone who for 10 years or so took sodium valproate, not in utero, but in childhood. At seven years of age, I was rushed to hospital with meningitis. Within a few hours, I was fighting for my life and in a coma for two days before responding to a spinal tap. I was one of the fortunate ones and survived without any of the known side-effects such as deafness, blindness or amputation, which routinely follow for those suffering from meningitis. Instead, I was left with epilepsy for the six years that followed. During that time, I got pretty close to the NHS, its out-patients and out-patient wards, and its brilliant teams of nurses and doctors, who worked together to get me better. I was prescribed sodium valproate, and dutifully took Epilim for at least six years, so I stand here also to give voice to epilepsy sufferers in this country.

Let me give the House a sense of what it is like to endure a convulsion. There is a stillness at the control centre of the mind, but a violent movement of the body—an arm, the head or legs. You are aware of it but unable to prevent or stop it. I recall that it is possible to steer it, though I do not know how. I remember, as a young boy, enjoying, like most siblings, bunking down in a bedroom with a sibling and being able, on the rare occasions I had convulsions—only between 4 am and 6 am —to wake my sister, with whom I had enjoyed a sleepover in one of our bedrooms. She alerted my parents and I was observed until the convulsion stopped because there is nothing that can be done.

Epilim—sodium valproate’s commercial name—is widely thought to be the greatest contributing factor to curing me of epilepsy. But for a simple twist of fate, I might have consumed the drug at a different time. When Emma and Janet presented me with the National Archives papers of minutes from 1973 and 1974, when decisions were taken to withhold the knowledge of the risk to foetal development, I was stunned. There were notes in those minutes advising two consecutive, different Governments not to include any warning or information on the risk. It is all too familiar: another national cover-up and further scandal from those closed decades; the “we know what’s best for you” attitude taken by the few to the many, and often said by men to women; the long wait for social justice, and a burning injustice finally coming to light. There was conspiring against the women for whom the drug was prescribed.

I want to spread not fear, but knowledge of sodium valproate. I stand here as a record of its effectiveness, but I also stand up for the unborn children, the women and the expectant parents to whom the risks are not widely enough known. I welcome the news that warnings will feature on the outside of packaging and hope that our medical leaders and the Government will appreciate that issuing guidance is not the same as ensuring knowledge.

I support practical steps such as the distribution of the valproate toolkit to all clinicians, pharmacists and women for whom the drug is prescribed. The Government have a duty to respond with practical steps to address the problem. However, our fight is as much against the cover-up as it is for the clear picture we need to send to parents where mum is taking valproate.

Let this be another moment where we draw caution for all those in positions of power who are about to make decisions that keep people in the dark, or withhold information that is life-affecting, life-changing or poses risk to life. Life will catch up with you. The truth will out. An open and tolerant society has freedom and equality of access to information as a guiding principle to life in it.

On health, decisions should not be made for us, but taken with us: nothing about us without us; a democratic voice at the table; an informed patient choice, not deals in the dark. We have a democratic deficit in decision making on health matters and services. Sadly, on the evidence of last night, there is a democratic deficit on the part of the Government, too. They say they are a listening Government, but I think we have a Government who refuse to hear.

I urge the Government to listen, to make amends for this national scandal, to look at compensation, to address the lack of knowledge, to apologise to the women and to the children who are now men and women themselves, and to make clear our instruction that no content or information pertaining to health and medical prescriptions and the decisions for patients to make should ever be withheld again.