The work of retired Belfast neurology consultant Dr Jim Morrow in monitoring the effects of the drug on pregnant women with epilepsy has been key to exposing the effects of sodium valproate.
He established the UK Epilepsy and Pregnancy Register in 1996 and said it is a “scandal” that the government had not taken any action on redress.
It was found that valproate use was causing about 10% of pregnancies to result in physical abnormalities and more than 30% had special educational needs, speech and learning difficulties.
Morrow said some women who want to start a family are faced with a difficult decision because some types of epilepsy “only respond to sodium valproate”.
“Having seizures is awful. People can fall, they can injure themselves,” he said.
He feels the onus should be on the UK government to help families.
“This drug has been around for about 50 years and the problems weren’t recognised for 30-so years, with another 10 years before any recommendations were made, so the doctors weren’t informed so they couldn’t really inform the patients,” he explained.
He said while a redress scheme is not a devolved matter: “Northern Ireland were the leaders in exposing this scandal” so “why can’t Northern Ireland take the lead and start a redress scheme independently?”
He said a redress scheme would be more than financial and also focus on providing carers, adaptions to the home and special educational needs.