Just three specialist nurses recruited to work with pregnant women who have epilepsy

So far just three full-time advanced practitioner epilepsy nurses are working on PREVENT.

Just three specialist nurses have been recruited to work with pregnant women who have epilepsy, despite the European Medicines Agency recommending dedicated supports be put in place more than four years ago.

The European Medicines Agency advice followed a growing understanding of risks for babies in the womb from prescribing an anti-epileptic drug, containing sodium valproate, in pregnancy.

They said a “valproate pregnancy prevention programme”, known as PREVENT, is needed in each country.

However, so far just three full-time advanced practitioner epilepsy nurses are working on PREVENT; two in Dublin and one in Cork according to the HSE.

A spokeswoman said funding has now been received for three more posts.

A briefing prepared for the health minister in June this year described full implementation as “essential”.

The document, released under the Freedom of Information Act, goes on to say: The HSE and department must be assured that there is full compliance with the conditions of this programme and that steps are put in place to monitor this compliance.” 

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The documents show “between 153 and 341 children may have experienced a major congenital malformation, and up to 1,250 children may have experienced some form of neurodevelopmental delay”. 

This data covers 1975 to 2015, with many affected now adults living restricted lives.

However, the briefing indicates a fetal valproate syndrome (FVS) diagnosis programme is not identifying all affected.

The clinic, established atChildren's Health Ireland (CHI) in Crumlin in 2018, has diagnosed “a total of 45 patients” the note states. There was no waiting list in June.

Those affected are eligible for medical cards, but data indicating diagnosis of applicants is not kept so the HSE could not say how many have applied.

Advocacy groups Epilepsy Ireland and Organisation Anticonvulsant Syndromes (OACS) Ireland believe more effort is needed to reach families.

“The HSE only aimed to contact women who were recently prescribed or currently on valproate. Those who were on Valproate historically were not targeted,” a spokesman said.

It is fair to say that there is still a lack of awareness of valproate and the impacts it can have.” 

He pointed to the wide range of symptoms associated with FVS as a stumbling block.

“We believe that there are many parents and families out there who haven’t yet made the connection between what their child is living with, and that the mother may have been on sodium valproate during their pregnancy,” he said.

Funding for healthcare supports locally is drawn from the overall budget, the HSE said.

However, the families’ spokesman said while it is correct to say there is a supports policy this is not active everywhere.

“It is clear from our families’ experience that there is a lack of awareness and understanding about this amongst individual community healthcare organisations. The HSE response depends on where you are,” he said.

“There are families who can gain access to services and others who are greeted with confusion when their diagnosis is mentioned.

“This needs to change and we are in continual contact with the HSE about the problems families are experiencing.” 

The first court case taken by an Irish family affected by prescribing of sodium valproate during pregnancy opens later this month.