Simon Harris (Wicklow, Fine Gael) | Oireachtas source

-----on patient leaflets, which is good. The Senator is correct that it took a lot of work. That information is being shared with representatives of the FACS forum.

We also have the valproate response project that is studying the numbers of those who have been affected by foetal anti-convulsant syndrome, which is the point being made by the Senator. There is also the development of the existing Irish epilepsy and pregnancy register. The Royal College of Surgeons in Ireland, in collaboration with the HPRA, will conduct an impact assessment project on the effectiveness of risk minimisation measures to prevent harms from such medicines, including sodium valproate. That work is under way.

The HSE is currently gathering information on sodium valproate through the patient support service. One of the issues I wanted to try to do, and on which I gave a commitment to the FACS forum when I met them, was that they would have a contact point within the health service for the many disparate needs of some of their children. They had talked to me about how they felt they were bounced from Billy to Jack - to use a colloquial phrase - when trying to identify the services. I am aware there is work ongoing with the Children's Hospital Group in that respect. To be clear, I had not ruled out an independent inquiry such as other countries have had but I remain to be convinced that it would be the best way to get some of the information they rightly need and deserve. I wanted to get all of these work streams to report first and then make that decision. I ask Dr. Henry to bring us up to date from his perspective.