A funded care pathway for children and adults affected by the teratogenic prescription drug, Epilim (sodium valproate), has yet to be implemented, according to patient support group Organisation for Anti-Convulsant Syndrome (OACS) Ireland.
The care pathway was a commitment in a HSE valproate response plan instigated in 2018, and this month, an Executive spokesperson informed the Medical Independent (MI) that 32 patients had “accessed” the pathway to date.
However, OACS Ireland, which represents survivors and their families nationally, informed this newspaper that it was “not aware of one person who has got services”. Families had sent continuous emails to HSE community operations for many months seeking to gain access.
MI also understands that the office of the HSE Chief Clinical Officer has received a complaint from OACS Ireland stating that families had felt rushed during clinical genetics consultations at Children’s Health Ireland (CHI), Crumlin.
Consultations had manifested in an “unhelpful and confusing outcome”, according to the group. OACS Ireland said it was informed by CHI Crumlin that the clinic was established at short notice, with a consultant undertaking the work on top of an existing busy schedule. The families had been promised a dedicated valproate diagnosis clinic.
In May 2018 the Oireachtas joint committee on health issued a report on foetal anticonvulsant syndrome with 12 recommendations, including that a “full suite of services” be agreed with families within eight weeks of the report’s publication.
Ms Karen Keely, Chair of OACS Ireland, told MI families were under increasing stress.
“If France can have everything in place for the thousands of children impacted by valproate can somebody in the Department and/or the HSE tell OACS Ireland why there is nothing in place for the few diagnosed in Ireland?”
Ms Keely said the HSE had recently committed to improving its communications with OACS Ireland and affected families.
OACS Ireland, the HSE and CHI are now in discussions on a weekly basis to progress matters.
Ms Keely also acknowledged Minister for Health Stephen Donnelly’s announcement in November that an inquiry will take place into historical prescription of valproate medicines.