Delay in Epilepsy Medication Inquiry Raises Concerns Among Families

One year after the appointment of Brid O'Flaherty as chairperson for the inquiry into the prescribing of epilepsy medication, significant delays have left affected families seeking answers. The inquiry, which was publicly launched in June 2024, has yet to commence its work, raising questions about the timelines and processes involved in what is expected to be a critical investigation into the safety of epilepsy treatments.

In her capacity as chairwoman, O'Flaherty was expected to initiate work promptly, as indicated by former Health Minister Stephen Donnelly, who assured families that the inquiry would begin “within weeks.” However, the lack of progress has led to frustration and confusion among the families affected by the prescribing of medications such as Epilim, which contains the active ingredient Valproate. Many families have expressed their concerns regarding the ongoing delays and the implications for their health and well-being.

According to Ciara McPhillips, a solicitor representing the Organisation for Anticonvulsant Syndromes (OACS) Ireland, the current situation raises critical questions about the Department of Health's preparedness for the inquiry. "Did they appoint the chair prematurely before they had their groundwork done, or has some unforeseen problem arisen?" she asked. Her comments highlight the uncertainty surrounding the inquiry's foundational processes, which were expected to be completed prior to the commencement of O'Flaherty's work.

The Department of Health has previously cited data regulation work as a reason for the delays. However, McPhillips noted that OACS was informed in October 2023 that this preparatory work had already begun. Families have since requested a meeting with the current Health Minister, Jennifer Carroll MacNeill, to clarify the reasons for the inquiry's stalling and to seek guidance on when they can expect to receive answers regarding their concerns.

O'Flaherty has reportedly engaged in preliminary discussions with OACS Ireland but has yet to provide a timeline for when broader discussions with individual families will commence. A spokesperson for O'Flaherty stated that while she has made significant progress in arranging for the inquiry to begin, the public-facing components will only commence once the Department finalizes regulatory frameworks.

The inquiry's delays come at a time when the Health Service Executive (HSE) is advising patients, particularly women of childbearing age, against becoming pregnant while taking Valproate. This medication has been linked to serious developmental issues in children when taken during pregnancy, highlighting the urgency of the inquiry and the need for immediate action to ensure patient safety.

As the inquiry remains stalled, families await clarity and support from the government, hoping that their questions will soon be addressed and that the inquiry will proceed to provide necessary insights into the prescribing practices of epilepsy medications. The implications of these delays extend beyond individual cases, underscoring the need for robust oversight in medical practices affecting vulnerable populations. With no clear timeline for the inquiry's commencement, the pressure mounts on the Department of Health to expedite the process and restore trust among those affected by the prescribing of epilepsy medications.