Sodium Valproate – a time for action not words

 

Our Chief Executive, Lesslie Young looks at The Cumberledge Review into the avoidable harm to women through the use of Primodos, pelvic mesh and Sodium Valproate and whether an apology from the government is enough.

Last week, The Cumberledge Review was published. It details how women have suffered avoidable harm through the use of Primodos, pelvic mesh and Sodium Valproate.

Sodium Valproate is an anti-epilepsy medicine which can be very effective in controlling seizures in some people.

However, it has been found to increase the risk of birth defects and developmental problems in children when taken by women during pregnancy.

Following EU guidance in 2018, the UK government introduced the Pregnancy Prevention Programme.

It was designed to support women to avoid pregnancy whilst taking Sodium Valproate and monitor their care should they decide to have a baby.

Despite this safety net, the review found women are still becoming pregnant whilst taking Sodium Valproate without any knowledge of the risks.

 

Is an apology from the government enough?

Titled “First Do No Harm”, the report details the significant harm and associated trauma experienced by women with epilepsy and their children across the UK.

It calls on the government to issue “a fulsome apology” for the significant damage inflicted on these women and children. But is that enough?

When Sodium Valproate was introduced in the 1970s, the clinical trials clearly documented foetal abnormalities in animals as a concern. Yet, it continued to be prescribed to women for over forty years often with little, if any, discussion about the associated risks.

Due to the significant lack of reliable data regarding the number of people living in the UK with epilepsy, we have no idea how many people may have been affected, but it is likely to be in the thousands.

This report has laid bare the paternalistic approach to health in the NHS.

Is it the case that women’s health does not matter as much? Is it the case causing significant avoidable harm which women are expected to live with is defensible?

Cumberledge noted the wholly unacceptable attitude of normalising symptoms as “women’s problems”.

Being a woman with a stigmatised disability, like epilepsy, only increases the trauma inflicted by the arrogance of this approach.

The shame and blame felt by mothers who have taken Sodium Valproate is significant. One mother is quoted as saying “I felt so guilty, I felt it was my fault for his problems and disability.”

The long-held view by healthcare professionals, to see the person not the condition, seems to have been absent in the way these women were treated and their conditions managed. Why? And why was it defended for so long?

Sodium Valproate

 

The solution for epilepsy?

The report recommends a register of women with epilepsy who are pregnant in an attempt to avoid a repetition of this indefensible approach and its catastrophic results, being exercised and tolerated again.

I would support the use of such a register but suggest it could serve a much more comprehensive purpose.

Only a national epilepsy database, which documents everyone with epilepsy in Scotland, can provide the infrastructure to aid clinicians to better manage the health of women with epilepsy when they become pregnant.

It will also serve as a valuable information source to help support all those with epilepsy in other circumstances.

Such a system is already being piloted in NHS Greater Glasgow and Clyde. This register not only lists everyone with epilepsy in the health board area, it also notifies clinicians of any serious events associated with their patients. One of which is pregnancy.

Neurologists are alerted if one of their patients books in with maternity services. It captures every woman with epilepsy who becomes pregnant.

It also helps to ensure their epilepsy is monitored and managed appropriately throughout their pregnancy and the potential risks of Sodium Valproate are mitigated.

This report clearly shows women have borne the brunt of a shamefully arrogant and paternalistic approach to medical care.

The person receiving the care is diminished whilst the person administering the care is shown to be dismissive of the impact of their actions.

This report is the starting point for so many who have endured so much. A fulsome apology is an easy thing for someone to craft and deliver. But they will be empty words if not supported by action.

The demonstration of a genuine apology will only be seen in the actions taken by those in a position to do so, to ensure this level of arrogance, dismissiveness and in truth, bad practice is not allowed to take hold again. And they must do so transparently and be accountable.

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