A strategic awareness campaign has commenced since the 11th August with the aim of achieving a high level of participation in the recently established Sodium Valproate Inquiry.
The inquiry is chaired by Bríd O’Flaherty BL and as dictated by the Terms of Reference, key aims of the inquiry are as follows:
- To provide a voice to persons with a diagnosis of foetal valproate spectrum disorder (FSVD), or progressing through the diagnostic pathway, their mothers and other family members.
- To document the regulation of sodium valproate in the State from initial licensing until the present day and the corresponding practices and controls in place relating to the prescribing and dispensing of this product to women of child-bearing potential throughout this time.
- To develop a timeline of significant developments in the scientific knowledge relating to the teratogenicity of sodium valproate.
- To assess the Irish health system’s current capacity to respond, disseminate and implement measures that address safety issues relating to use of sodium valproate in women of child-bearing potential, and to provide recommendations regarding same, with consideration of relevance of other anti-seizure medications (ASMs).
- To assess the adequacy of services and supports currently provided to those diagnosed with FVSD and their caregivers, and to provide recommendations in this regard to the Minister for Health.
- To make recommendations as appropriate to the Minister for Health.
The inquiry will work in two phases; the first investigating the timeline for use of Sodium Valproate in Ireland; the second giving voice to families affected to share their experiences.
For the second phase, the Inquiry would like to hear from those with a diagnosis of Foetal Valproate Spectrum Disorder (FVSD), those progressing through the diagnostic pathway, and/or their family members.
If you fall into these categories and are interested in engaging with the inquiry, you can get in touch with the inquiry team by:
- Calling the inquiry office on 01 2233558
- Writing to the inquiry team at Sodium Valproate Inquiry, 7/8 Mount Street Upper, Dublin, D02FT59
- Emailing info@svinquiry.ie
- Completing the enquiry form by visiting the ‘Sodium Valproate Inquiry’ website
As noted above, the Sodium Valproate Inquiry has a dedicated website – and provides further details on the inquiry, its team and FAQs. You can visit the website via the button below.
Further Information
- You can read more about the inquiry commencing by visiting the ‘News’ section of our website
- If you are hearing about Sodium Valproate for the first time and suspect your child may be affected, we would encourage you to talk to our colleagues in OACS Ireland, as representatives of families who have been affected. You can find out more and get in touch by visiting the ‘OACS Ireland website.
- For more information on the risk reduction measures currently associated with Sodium Valproate for women and girls of childbearing age, visit the 'Women' section of our website
- To look back on the history of this campaign alongside OACS Ireland, visit the 'Advocacy' section of our website
- Visit the Gov.ie website to read the Minister for Health's statement on the commencement of the inquiry
- Visit the OACS Ireland website for further details on FVSD and how to get in touch
- If you need any information or support on your or your loved one’s journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. Visit the ‘Our Local Service’ page on our website for details of your local Community Resource Officer.