Families to consider terms of inquiry into controversial epilepsy drug

Families to consider terms of inquiry into controversial epilepsy drug

Theresa Byrne and her daughter, Ellie, at their home near Roundwood, Co Wicklow. Picture: Moya Nolan

Families affected by the prescribing of sodium valproate to pregnant women are deciding if they will accept terms proposed for an inquiry, following a frank meeting with Health Minister Stephen Donnelly.

This will relate to the use of a prescription drug, Epilim, that contains sodium valproate, and which is commonly-prescribed for people with epilepsy. It can harm a foetus, when taken by pregnant women.

There is a 10% risk that a baby in the womb exposed to this will have congenital malformations and a 30%-40% chance of neurodevelopmental disabilities. The condition is known as foetal valproate spectrum disorder.

Some 1,250 families have been affected in Ireland, with inquires having taken place in Britain, France, and other countries.

A spokesman for OACS Ireland and Epilepsy Ireland, supporting the families, said the meeting took place on Tuesday.

"The meeting was a frank exchange of views on the latest proposed terms of reference for the inquiry, between the patient groups and the minister and his officials," the spokesman said.

This is the second time the group have been presented with potential terms for an inquiry. The initial terms were amended following advice from the Attorney General.

The spokesman said families expressed their frustrations at the pace of progress in establishing the long-awaited inquiry.

They also discussed, he said, “The reservations that exist with the currently drafted terms; and how families continue to struggle to access services for their children living with foetal valproate spectrum disorder". He said the health minister expressed his commitment to the inquiry and to understanding the history of how this medication was used in Ireland.

"Our reservations remain in relation to the terms of reference, the powers of the inquiry, and ultimately on whether it will deliver answers for families," the spokesperson said.

"However, it has been made clear that the currently drafted terms are the maximum which can be delivered." He added: "OACS Ireland, as representatives of families affected, are now reflecting on the discussions, and will be consulting with members before deciding on whether to participate in the proposed inquiry or not." A spokeswoman for the health minister confirmed that officials and Mr Donnelly met the families.

"However, no date has been set to commence an inquiry," she said. "The meeting was focused on the proposed inquiry, rather than on disability supports."

The Irish Examiner recently highlighted the case of Ellie Ginty (21), in Wicklow, whose mother was not advised to stop taking sodium valproate while pregnant.

Her mother, Theresa Byrne, attended the meeting, seeking answers for her children.

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