Two years on from the publication of the Hughes Report, a mother from Belfast is marking a double anniversary she never expected.
Two years since the harm caused by sodium valproate was formally acknowledged and two years since Lorraine realised her own family was part of that story.
Lorraine Nesbitt was just 15 years old when she was first diagnosed with epilepsy, after a playground accident left her with a head injury. She was prescribed Epilim and, like most teenagers, trusted that the medication she was given was the right one.
Now aged 47, Lorraine has been taking the medication ever since – including throughout all three of her pregnancies because that was the advice she was given. She was reassured it was the safest option, told the risk from seizure outweighed any potential harm to her babies and warned not to change or reduce her dose. In fact, during one pregnancy, her medication was increased to the maximum level.
She said: “You trust the medical professionals, because they are the experts. You assume they know what’s best.”
“Brings everything back”
But now, each year Lorraine is faced with a cruel irony. She is required to sign a form confirming she understands the risks of taking sodium valproate during pregnancy – the risks that were never shared with her when she needed to know, despite being known to the medical profession at the time.
It was only when those warnings were finally put in front of her that she began to understand what had happened to her children.
Lorraine said: “Every time I have to sign that form it brings everything back. It’s Epilim, it’s the guilt, it’s the years of blaming myself. I’m being asked to acknowledge the risks I was never told about, risks that were known, while living with the consequences every single day.
“For so long I thought it was my fault. It took seeing those warnings to realise it wasn’t. It was the drug.”
Lorraine’s two sons, now 25 and 26, both have sodium valproate syndrome. They are autistic, have severe learning disabilities and complex physical needs and will require round-the-clock care for the rest of their lives. One was born with a hole in the heart. The other has serious bone and development conditions.
Her daughter, now 29, also has epilepsy and has recently been diagnosed with severe spinal and joint problems that require ongoing treatment.
“My children’s lives have been taken away from them,” Lorraine said. “And I was never given the information to protect them. I often ask myself whether the doctors would have prescribed the drug to their own daughters, wives or sisters?”
Life on hold
The impact has touched every part of Lorraine’s life. Her marriage broke down under the strain, her health suffered, and her career was put on hold as she took on the role of full-time carer for her children.
Her days are shaped entirely around her children’s needs, and even leaving the house requires careful planning.
“I need a babysitter every time I go out,” she said. “And my sons are in their twenties. “
Luckily, Lorraine has a great support network around her who help her both practically and emotionally.
“I have an amazing family, especially my sisters, who help me cope and I don’t know what I would do without their support.”
“We have been abandoned”
Evidence about the risks of sodium valproate in pregnancy has existed since the 1970s, yet for decades this information was not consistently passed on to women taking the drug. Around 20,000 children are thought to have been affected.
Sodium valproate is an anti-seizure medication that can be effective for some people with epilepsy. However, since 2018 stricter guidelines around prescribing the drug to pregnant women were introduced due to the risks of serious birth defects and developmental problems.
In 2024, the Hughes Report set out how families like Lorraine’s could be supported, recommending a government-led redress scheme with both financial and non-financial help.
But two years on those families remain in limbo, still waiting for that support to materialise.
“We feel like we have been abandoned. After everything that has been said, it’s hard to not feel forgotten. You hear the words, see the report and nothing changes,” Lorraine said, adding: “This isn’t about money. It’s about being able to care for my children properly and having some peace of mind about what will happen to them when I’m no longer here.
“We followed the advice we were given. Now we need the Government to follow through.”
Need support and reassurance
For Lorraine and countless other families, this is not about revisiting the past. It is about coping with the realities of everyday life, accessing the right support, and having some reassurance about what the future holds.
Alison Fuller, director of health improvement and influencing at Epilepsy Action said: “Lorraine’s experience is just one example that shows how deeply families’ lives have been affected by these failures. Too many people are still navigating complex caring responsibilities without the support they were told would follow.
“We will continue to press for progress until families have the practical help and long-term reassurances they need. They have lived with uncertainty for long enough and they should not be left to carry this alone.”
A spokesperson for the Department of Health said: “We recognise the significant impact that sodium valproate has had on people and their families.
“This is a complex issue and our priority is to ensure any response is fair, balanced and sensitive to those affected. We are carefully considering the recommendations within the Hughes Report, in collaboration with relevant departments, and we aim to provide an update in due course.”
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