FACS Claims

Our Director, Gilly Daniels, has first hand experience in this sector.

“Having suffered with Epilepsy since 2001 my seizures were intermittently uncontrolled for a period of around 15 years. The only medication that controlled my seizures was Epilim (Sodium Valproate). Over the years I had tried many different drugs including Lamotrigine and Keppra.

In 2014 I became pregnant with my first child. My husband and I were informed of some of the congenital defects that could arise from Epilim during pregnancy, mainly life changing disabilities including Spina Bifida were touched on during my consultations, but we were reassured that subject to the NTD scan retuning normal results, then I could continue my pregnancy whilst taking Epilim.

Even in 2015, at no point were we informed of the exhaustive list of issues that AED’s in pregnancy could cause. I remained on Epilim for the first twenty weeks of my pregnancy, until we experienced restricted growth. At this point in time my Epilim was immediately withdrawn and we attended weekly growth scans.

Our first child has suffered some health complications in his early years, which we hope have now been resolved through surgery however we will not know the long term implications of these until he is much older.

Our first child took part in the NAME study, conducted between 2015 and 2018, led by Dr Rebecca Bromley, a study to analyse the effect of AED’s during pregnancy.  As part of this study, our child underwent neurodevelopmental studies during the first two years of his life and thankfully, he met all of the developmental benchmarks.

Upon publication of Henrietta Hughes Report in early 2024, the physical, learning, and developmental complications listed in this report were much more extensive than had ever been communicated to my husband and I, despite there being knowledge of this pre 2014. 

Not long after my pregnancy, I received written communication from the NHS advising that I would not be permitted to go back onto Sodium Valproate due to being in a “childbearing age bracket”.

At this point in time, I considered this a cautionary preventative measure, I still had no idea the extent of research that had already taken place and the risks that had already been identified and not communicated by medical professionals.

 I understand first hand the torment and guilt that mothers have endured in trying to assess and balance the risks of the harm a seizure during pregnancy could cause versus the risk of taking medications during pregnancy. Further, many mothers feel they have been misinformed of the actual risks of this medication and the publications of the reports have frequently referred to this as a “scandal” and as severe as “Thalidomide”

 I always have, and always will have, a keen interest in this topic as well as the ability to understand what victims have been through. I liaise with INFACT and Emma Murphy, INFACT Co-Founder, who has campaigned for over 30 years on this topic.”