One year later, work on epilepsy medication inquiry is yet to begin
Affected families want to know what has caused the delay to the inquiry beginning its work in full. The role of chairperson was advertised early last year, and when the inquiry was publicly launched and the chairwoman confirmed in June 2024, it was understood that a certain amount of time was needed to lay the groundwork.
At the time, then health minister Stephen Donnelly said work would begin 'within weeks'.
This led families to understand the chairwoman, barrister Brid O'Flaherty, would be supported to begin work quickly.
Recruitment notices advised a chairperson would 'sign a contract for services for a period of 12 months with the possibility of extending by a further six months'.
Asked whether this contract is being extended now, a department spokeswoman said they cannot comment on individual contracts, adding:
However, once the inquiry formally commences, a time commitment of between 12 and 18 months is envisaged for the chair to conduct an independent, fair, and rigorous process.
Ms O' Flaherty has met patient group the Organisation for Anticonvulsant Syndromes (OACS) Ireland for initial discussions.
However they do not know when her wider work with individual families can start.
Solicitor for the group, Ciara McPhillips, partner at Michael Boylan LLP, said the department's stance raises more questions than it answers.
'The questions now point back to the department, did they appoint the chair prematurely before they had their groundworks done, or has some unforeseen problem arisen,' she said.
The department previously cited work on data regulations as one reason for the delays.
However Ms McPhillips said OACS Ireland were told in October 2023 this work had already started.
The families have requested a meeting with minister Jennifer Carroll MacNeill but are yet to hear when this might happen.
They have questions. This is why we need to meet with the minister to understand and get answers as to what is the hold-up.
Ms O'Flaherty was unavailable for interview, a spokeswoman said.
She added: "she has conveyed that the public-facing elements of the inquiry will commence shortly after the Department has finalised the regulations.'
No date was given for when this might be.
They confirmed she has been working, saying she did 'significant work' on practical arrangements for when the inquiry starts.
The HSE now advises girls and women not to get pregnant while taking this medication, brandname Epilim containing Valproate, and to discuss pregnancy plans with their doctors.
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