Within weeks of becoming an MP back in 2015, I was approached by my constituent Janet Williams, to work alongside her, and other campaigners in their fight to get justice for the thousands of families around the country affected by Sodium Valproate. This drug was prescribed to, and taken by pregnant women, it led to serious and distressing neurodevelopmental conditions in their children.
Sodium Valproate was prescribed for the treatment of epilepsy, despite drug manufacturers and regulators knowing that it caused birth defects. The campaign for justice essentially has two parts. The first, to prevent children from being born today with birth defects caused by valproate (and other anti-seizure medication, such as pelvic mesh implants, and Primodos a hormone-based pregnancy test). The second part, is to secure compensation for those affected by this and their families.
I am the Chair for the All Party Parliamentary Group (APPG) for Valproate and other AEDs in Pregnancy. The objectives and aims for this APPG include:
- To raise areas of concern with Government or other policy makers.
- To raise the profile of Fetal Anti-Convulsant Syndrome within Parliament.
- To seek opportunities to help improve the life and services of the sufferer/victim.
- To seek a Statement of Regret, Care Plan for those affected and compensation for the parents of families affected from Government and pharmaceutical companies, and to establish on going funding for the large number of new born and newly diagnosed children.
- To raise ‘Recognition for the Condition’ of the cause of FACS thus minimizing the risks.
- To discuss and implement changes required to the law to ensure that consumers are afforded greater protection. Current law appears to provide no effective protection for the consumer.
- To investigate and examine the effectiveness of the principles, departments and systems that exist or need to be implemented to minimise the risk of similar problems recurring in the future.
To achieve these aims, with the support of campaigners, I have tabled questions which address these aims, secured debates in the House of Commons, and met with Ministers and regulators. Also, I welcomed a landmark report into three NHS scandals that found patients have been dismissed, overlooked and ignored for decades.
Where we are now!
Prevention: There is now something in place called the Pregnancy Prevention Plan, which legally requires clinicians to discuss the risks of Valproate with a woman of childbearing age, once a year and requires pharmacists to always use boxes which carry large print warnings. This has been a huge step forward, but there are still challenges ahead. There is still some concern with how this operates in practice, because we are aware of a number of women becoming pregnant, without knowing what the risks were. So, we are continuing to put pressure on the Government, to find a comprehensive solution.
Compensation: Theresa May announced a review just before leaving office. The Cumberlidge Review recommended compensation should be awarded for Valproate victims (along with MESH and Primados victims). In the report Baroness Cumberledge wrote, “I have conducted many reviews and inquiries over the years, but I have never encountered anything like this; the intensity of suffering experienced by so many families, and the fact that they have endured it for decades. Much of this suffering was entirely avoidable, caused and compounded by failings in the health system itself.”
The Government rejected the reviews findings initially, and said any redress would need to go through the courts. However, they have since asked the Patient Safety Commissioner to look at what compensation would look like in practice, and have said they will make a final decision on compensation following this.
If you or someone you know has ever been affected by Sodium Valproate or other AEDs in pregnancy, and would like to share your story with me, please feel free to do so by emailing cat.smith.mp@parliament.uk. There are ways that you can get involved and donate at: https://infactuk.com/donate/.