OACS Ireland are asking our members to write to their local TD to ask for their support for our ongoing campaign for an Independent Inquiry for Families affected by Sodium Valproate (Epilim). You can see more on our calls for an Independent Inquiry at the link below:
A key aspect of our campaign is ensuring that TD’s are aware that families within their constituencies have been impacted – to allow to gain support for our campaign. You can find your local TD and their contact details at the link below:
To this end, we have drafted an email which you can send to your local TD, seeking their support. Please see this email in italics below and note the opportunity for you to outline your own personal experience at the beginning of same.
My name is X from Y and I am writing to you regarding Sodium Valproate (Epilim).
[INSERT YOUR PERSONAL TESTIMONY HERE DESCRIBING HOW YOUR CHILDREN HAVE BEEN IMPACTED]
I was not made aware of the risks this drug could have for my children, namely that 10% of children exposed to the drug in the womb will be born with malformations and 30-40% will have neurodevelopmental disabilities. These disabilities are collectively called Foetal Valproate Syndrome (FVS). Epilim is used in the treatment of epilepsy and bi-polar disorder and was first licenced here in 1975. The HSE estimate that 1,250 children have been affected in Ireland since then.
I am a member of the OACS (Organisation for Anti-Convulsant Syndrome) Ireland support group, a registered charity established to raise awareness of this issue and to advocate for better services and supports for the families affected.
I am writing to you because urgent action is needed on three fronts:
- Over 1500 women of child-bearing age are currently taking this drug in Ireland, and despite a range of risk-minimisation measures introduced since 2018, unacceptably large numbers of these women are still not aware of the risks, as evidenced by a recent Epilepsy Ireland survey. More needs to be done to make sure that no more children are born with life-long, yet totally preventable disabilities.
- Families already affected need supports and services to help manage the complex needs of our children. In 2018, the HSE – on the Minister’s instruction – established a Valproate Response Group which worked with OACS Ireland to develop a package of community supports for families. However, none of the measures proposed have ever been actioned or resourced and families today are no better supported than they were two years ago.
- Finally, members of OACS Ireland are living every day with the ramifications of being prescribed this drug in pregnancy. We have many questions about how this was allowed to happen, despite growing evidence since the 1960s about the risks of the drug in pregnancy. We want to know why it took almost 40 years for regulatory action and we want to know why we continued to receive sodium valproate, often without any discussion of the risks, throughout a period when the adverse effects were well documented. We believe that an independent inquiry is needed in Ireland to answer these and other questions. On July 8th, a non-statutory inquiry on this issue in the United Kingdom (The Independent Medicines and Medical Devices Safety Review) issued their final report and recommended that the British Government issue a full apology on behalf of the healthcare system to all those impacted by valproate. The inquiry found multiple systemic failings across the healthcare system, concluding that “as data emerged on the risks of the use of sodium valproate over the decades, it took too long for action to be taken by the healthcare system to ensure that risks were minimised”. Minister Stephen Donnelly has previously stated his “100 per cent” support for a similar inquiry in Ireland. Furthermore, in 2018, the Oireachtas Committee on Health made 12 recommendations on the State’s response to valproate issues including that an independent inquiry be established to investigate the historical use of the drug. To date, no substantive action has been taken to make this happen or provide answers to my family and hundreds of others who deserve to know “who knew what and when”.
We should not have to wait any longer for answers, for community services for our children or for appropriate steps to be taken to stop this avoidable harm being done to more families in your constituency and around the country.
I and my family now seek your support in delivering on these urgent actions. I would be very grateful for the opportunity to meet with you to discuss further at your convenience. Campaign leaders from OACS Ireland and Epilepsy Ireland are also available to meet virtually.
Below are some links to further information that may be helpful.
I look forward to hearing from you soon.
We would appreciate if you could keep us versed of any replies you may receive from your local TD by emailing at firstname.lastname@example.org and thank you for your continued support. Together we can get the answers to who knew what and when.