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Irish Examiner
3 days ago
- Health
- Irish Examiner
Families criticise delays to inquiry into epilepsy drug valproate
Families have criticised inordinate delays to the opening of an inquiry into the prescribing of valproate to pregnant women for epilepsy. Families affected by the prescribing of sodium valproate, which can cause serious birth defects and development disorders, were told last year that the inquiry would begin "within weeks" but there is now no timeline of it starting. The Department of Health has blamed the delays on data protection issues, but Ciara McPhillips, solicitor for the patients' advocacy group OACS Ireland, said: 'It seems incredible that it is taking so long. In October 2023, when the Department of Health was seeking to appoint a chairperson they advised OACS in writing that they were already working on the necessary data protection framework. 'And yet here we are 20 months later and 12 months on from the appointment of a chair and the inquiry has not commenced because of data regulations.' Ms McPhillips, partner with Micheal Boylan LLP, said signing off on data regulations is the responsibility of the health minister. 'We now understand, on foot of recent parliamentary questions, and a direct email from the minister, the regulations are with an arm of the Attorney General's office and that they are being worked on,' she said. Sinn Féin TD Rose Conway Walsh will now raise the delay in the Dáil. 'I absolutely share the frustrations,' she said. 'There is no explanation whatsoever for why it should take this long. It is really just putting the parents through more excruciating anxiety and pain, and these parents have suffered enough already.' Debbie Adams, whose two daughters, aged 13 and 11, live with Fetal Valproate Syndrome said: 'I've no faith in the system. 'This should not have happened. This has changed the trajectory of our family's life.' A department spokeswoman said regulations under the Data Protection Act 2018 are required to give a robust legal basis to the inquiry, including for data protection. The statutory instruments are being drafted 'as a priority', she said. 'When these have been finalised, it is anticipated that the public facing elements of the inquiry will commence shortly thereafter,' she said.
Irish Examiner
3 days ago
- Health
- Irish Examiner
'No faith in the system' as mother waits year for epilepsy drug inquiry
Debbie Adams has been waiting a year to address an inquiry into the prescribing of epilepsy medicine containing Valproate to pregnant women. Her daughters, aged 13 and 11, were diagnosed with Fetal Valproate Syndrome (FVS) in 2020. This came after years of diagnosis for individual symptoms. Their youngest daughter also had double surgery for hip dysplasia at Temple Street Hospital. A letter advising that she needs a review as part of investigations into these surgeries has only added to the worries for Debbie and her husband. Last June, an inquiry was launched into the prescribing of valproate, which can cause serious birth defects and development disorders. Families were told the inquiry would begin "within weeks" but there is still no sign of it starting. Debbie chose not to attend the launch event. 'I wanted to get excited but the pessimistic side of me said 'how long are we going to be waiting?' and that's probably why I didn't go," she said. One year on, she is just tired. 'I've no faith in the system,' she said. This should not have happened. This has changed the trajectory of our family's life. She wants answers: why does she have a wall-planner in the kitchen covered with therapy appointments? 'The children have grown up like this and they think everybody's life is like this. We had different dreams for them,' she said, tearfully. The HSE now advises if a woman or girl becomes pregnant while taking valproate (brand name Epilim), their baby is at risk of serious birth defects and developmental and learning disorders. Debbie, who has been taking Epilim to control her epilepsy seizures, recalled speaking with her neurologist when pregnant with Isobelle. Debbie Adams took Epilim to control her epilepsy seizures. Picture: Moya Nolan 'I was warned about spina bifida and cleft lip and palate; they were the two things that I was aware of,' she said. She was relieved early scans showed no signs of these but does not recall discussion of wider risks under Fetal Valproate Syndrome (FVS). Isobelle and her sister Isla, who uses a mobility scooter, faced similar challenges as babies. 'My youngest was showing all the same delays — not crawling, not walking, not speaking, and I said this can't be normal to happen twice in the one house,' she said. She was reassured during a neurology appointment about any potential links to her medication. But soon afterwards, while in Portugal at a family wedding, she saw a report from the British parliament on Sky News. Devastating information They were talking about FVS, and she recalls racing out to find her husband to share the devastating information. Returning home, they met up with Karen Keely, founder of patient group OACS Ireland, which represents more than 130 families. 'It's a horrible reality,' she told the Irish Examiner,sitting in Karen's kitchen. 'You live in fear for them [the children] for when you're gone.' She pointed out that despite pledges to support affected families, they still had to battle long waiting lists and delays for therapies. She is aware of recent High Court cases taken by other families struggling for answers. 'For me that was like validation, it's happened, acknowledgement somewhere has taken place,' she said. Ms Keely said families feel "absolutely disgusted' by the delays to the inquiry. She said people want 'acknowledgement this has happened; harm has happened'. The Department of Health said when work on data protection issues are finished, 'it is anticipated that the public-facing elements of the inquiry will commence shortly thereafter". No definitive timeframe was given.
