Inquiry into use of epilepsy drug during pregnancy 'has no one to lead it' 

Karen Keely founder of OACS Ireland, (Organisation Anticonvulsant Syndromes Ireland) an advocacy group for families affected by sodium valproate prescribed during pregnancy. Picture: Moya Nolan

An inquiry into the prescribing of medication containing valproate during pregnancy - which was announced six months ago - still has nobody to chair it, families were told on Tuesday.

Commonly sold in Ireland under the brandname Epilim, these medicines, primarily used to treat epilepsy, now carry warnings against getting pregnant while taking this prescribed medication.

The inquiry is expected to look at use of sodium valproate in Ireland since it was first licensed. It will follow similar inquiries in other countries including England.

However despite being approved by Cabinet in July last year, families still do not know when the inquiry will open.

Karen Keely, founder of advocacy group OACS Ireland (Organisation Anti-Convulsant Syndrome) said a meeting with Department of Health officials lasted about two hours.

“There is no person named for the chair yet, and there is no date for that as yet,” she said.

“We want the process to run smoothly and quickly. However we want to have the right person in the job and so far the department hasn’t found that person.” 

"The families must receive all the supports they need to participate in the inquiry when it opens,” she said.

She also said it was disappointing a document they expected to discuss with officials was only shared with her and fellow OACS member Theresa Byrne late on Monday.

“Between myself and Theresa we have five children affected, we can’t just drop everything to look at documents, we need time,” she said.

Epilepsy Ireland support the families in their efforts and said: “the promised inquiry needs to be urgently established.” 

In describing the risks to children, they said while Epilim is “extremely effective” at controlling seizures, if taken by a pregnant women “there can be devastating effects on the child”.

These include: “In 30%-40% of cases, the child will be born with neurodevelopmental disabilities such as delayed learning, ADHD, autism and memory issues. 

"In 10% of cases, the child will be born with congenital malformations.” 

A Department of Health spokesman said: “This inquiry will be designed to give a voice to patients and their families while looking at the use of sodium valproate in Ireland since it was first licensed.” 

He said work is continuing to set this up “as soon as possible.” 

The department is "actively working to source an appropriate person to chair the inquiry to lead a fair and independent process," he said.