Scots mother's desperate plea for justice for primodos scandal victims
A Scots mum who blames primodos for causing her daughter’s disabilities has issued a desperate plea for help for families whose lives have been ‘torn apart’ by the drug scandal.
Wilma Ord, from Livingston, will never forget the day she went for a pregnancy test in 1970 and her GP handed her tablets from his desk drawers.
Her daughter Kirsteen, now 50, was born profoundly deaf, severely asthmatic and with cerebral palsy.
Wilma, 74, feels angry that she was a ‘guinea pig’ and is in no doubt primodos damaged her baby. Wilma says Kirsteen has tried hard not to let her disabilities hold her back but has live an isolated life. She’s still racked with guilt for taking the hormone-packed pill which studies have shown caused birth defects.
It’s estimated 1.5 million women in the UK used the drug, produced by Schering chemicals, from 1958 until it was taken off the market in 1978.
Harrowing stories like Kirsteen’s came to light in an independent report in July 2020 that concluded primodos patients came to “avoidable harm” because the healthcare system failed to act after serious concerns about the drug were raised.
The UK Government was ordered to make an apology to victims after the review led by Tory peer Baroness Julia Cumberlege was published.
For Wilma and families still living with the fallout – after many campaigned for decades – an apology has proved to be cold comfort.
Wilma and her husband George first knew something wasn’t right when Kirsteen was 18 months old. But it wasn't until Kirsteen was in her 40s that they learned about primodos.
She added: “The first year of her life I was so happy. But I soon came crashing back down to earth. Kirsteen could only walk with support by age two. After doing tests we were told she was profoundly deaf and had cerebral palsy. They said it was ‘just one of those things’. I was always led to believe there was no explanation for it.
"After I learned about primodos I felt relief at first then I was so angry. All those years I felt so guilty. That it must be my fault somehow. I am in no doubt it was the cause. We were guinea pigs.”
Mum-of-two Wilma is terrified about what the future holds for Kirsteen, as her mobility is deteriorating.
Wilma said: “It breaks my heart all these years Kirsteen has had to struggle. I’m 74 so I don’t know how much longer I can carry on helping her. She can’t manage alone as she is prone to collapse. She will likely need a wheelchair soon. I take her for walks and I’m often the only contact with people that she has.”
"She is bright and got her degree and she worked as lab technician in hospital for twelve years. But it has been hard for her to make friends. People find it hard to understand her. We have always had to fight for any help. Many have died waiting for justice. I know of 11 parents that have died this year before getting redress.”
Cumberlege who chaired the review investigating reports from patients of harmful side effects from medicines and devices including mesh implants, said there is a "moral duty" for the manufacturer of Primodos to contribute to a fund to care for those allegedly damaged by the drug.
And a separate investigation found that in the 1970s a regulator destroyed materials relating to research which showed a link between the drug and malformations.
But Bayer, owners of Schering, have denied the drug was responsible for causing any deformities in babies.
Campaigners are still fighting for a financial support scheme for victims through an ongoing group legal action against drug firms and the UK Government.
Wilma said after living with a lifetime of regret she will not give up on getting her daughter help to pay for the quality of care she deserves:
"Kirsteen’s life has been severely damaged. It has never been her own. And the family gets torn apart. That must be recognised. To this day I still carry guilt for taking the pills.
“My files from the time are missing. I believe it’s intentional. They erased my daughter’s birth from my records. It’s shameful.
“It would give me peace of mind to know she has enough help to meet her needs. She can't even walk on a beach and it’s cruel because she’s so aware of her limitations and feels excluded and isolated all the time. I don’t want her to be scared or strangers coming to her house. I want her to have choice in her care. A life she can be proud of. I will keep fighting for her. They can’t ignore us forever.”
Hannah Bardell SNP MP for Livingston said it was “unimaginable” victims are still waiting for justice:
She said: “Wilma has lived with the burden of guilt and now she want’s to know her daughter will be looked after. Financial support is the least we can do for these families. It has been proved that evidence showing a causal link between the drug and malformations was deliberately omitted and censored. But the worst of it is that families and victims have been strung along for decades. Many died waiting for answers. The Government can't turn their back on this. People need proper care and treatment. It’s time to right this wrong.”
A Scottish Government spokesperson said:
“We have great sympathy for those affected by Primodos, we reaffirm the apology we have previously made to all those who have been directly harmed by Primodos and those who care for them. We are committed to implement all of the recommendations of Baroness Cumberlege’s review where they relate to the responsibilities of the Scottish Government.
“We are currently engaging with patient groups and other stakeholders to encourage the UK Government to act on the recommendations that relate to its responsibilities.”