News Article from The Examiner, Mon, 02 Jun, 2025

Mon, 02 Jun, 2025 – 10:37

Niamh Griffin, Health Correspondent

Families have criticised inordinate delays to the opening of an inquiry into the prescribing of valproate to pregnant women for epilepsy.

Families affected by the prescribing of sodium valproate, which can cause serious birth defects and development disorders, were told last year that the inquiry would begin “within weeks” but there is now no timeline of it starting.

The Department of Health has blamed the delays on data protection issues, but Ciara McPhillips, solicitor for the patients’ advocacy group OACS Ireland, said: “It seems incredible that it is taking so long. In October 2023, when the Department of Health was seeking to appoint a chairperson they advised OACS in writing that they were already working on the necessary data protection framework.

“And yet here we are 20 months later and 12 months on from the appointment of a chair and the inquiry has not commenced because of data regulations.” 

Ms McPhillips, partner with Micheal Boylan LLP, said signing off on data regulations is the responsibility of the health minister.

“We now understand, on foot of recent parliamentary questions, and a direct email from the minister, the regulations are with an arm of the Attorney General’s office and that they are being worked on,” she said.

Sinn Féin TD Rose Conway Walsh will now raise the delay in the Dáil. “I absolutely share the frustrations,” she said.

“There is no explanation whatsoever for why it should take this long. It is really just putting the parents through more excruciating anxiety and pain, and these parents have suffered enough already.” 

Debbie Adams, whose two daughters, aged 13 and 11, live with Fetal Valproate Syndrome said: “I’ve no faith in the system.

“This should not have happened. This has changed the trajectory of our family’s life.” 

A department spokeswoman said regulations under the Data Protection Act 2018 are required to give a robust legal basis to the inquiry, including for data protection. The statutory instruments are being drafted “as a priority”, she said.

“When these have been finalised, it is anticipated that the public facing elements of the inquiry will commence shortly thereafter,” she said.

OACS Ireland are grateful to The Examiner Newspaper and all journalists who have helped us highlight our cause!