'It's long overdue': Welsh victims of Sodium Valproate scandal welcome compensation calls
Video report by ITV Wales reporter, Rob Shelley
Patients damaged by a drug that caused up to 20,000 children to be born with birth defects have welcomed calls for compensation.
Epilepsy treatment sodium valproate has been linked to physical malformations, autism and developmental delay in some children when it is taken by their mothers while pregnant.
Mandy Turner, of Prestatyn, was given the drug to treat her seizures, but no one told her when she was pregnant with either of her two sons that it carried a significant risk of causing birth defects.
"Nothing was mentioned to me at all", said Mandy.
As a result of taking the drug during her pregnancies, both of her sons Elliott and Matthew have autism and deal with significant pain.
"I don't know how it's going to affect me as I get older," said Mandy's son Elliott.
"Because even now I'm finding that if I walk a significant distance or if I'm on my feet all day, I get pains in my ankles, my knees and my lower back.
Her other son Matthew added: "It's really changed my life."
Earlier this month, the Patient Safety Commissioner for England outlined a framework for compensation payments for victims which saw up to 20,000 babies born with birth defects after their mothers unwittingly took the drug during pregnancy.
The report says there is a "clear case" for redress based on the "systemic" healthcare and regulatory failures for women and children affected by the issues in England.
It says the government should create a two-stage financial redress scheme – an interim scheme and a main scheme. An interim award of £25,000 was the “median amount patients said would be appropriate”, the commissioner Dr Henrietta Hughes said.
This would be followed by a main scheme with pay outs based on the individual needs of each patient.
Mandy said this is the "closest we've ever come to some kind of redress, it's so long overdue - for not just ourselves, but for all families that are affected by this."
Mandy's husband Mark said he'd have "reassurance personally knowing that when I've gone and when Mandy's gone, Elliott has got something and Matthew has as well."
Mandy added: "These families, including ourselves have wasted so long now - we're talking thirty years and it's just long overdue."
What is Sodium valproate?
Sodium valproate is used to treat epilepsy, bipolar disorder and occasionally migraine headaches.
This medicine is only available on prescription as capsules, tablets or a liquid, and can also be given by injection in the hospital.
Among women who take valproate during pregnancy, around 10 in every 100 babies are born with birth defects, compared to two to three out of 100 of the general population.
Examples include spina bifida, facial and skull malformations include cleft lip and palate, as well as malformations of the limbs, heart, kidney, urinary tract and sexual organs.
The medicine can also lead to long-term learning difficulties and development problems, affecting between 30 to 40 babies in every 100. These can include walking and talking later than other children of the same age, poor speech and language skills, memory problems and lower intelligence than other children of the same age.
Furthermore, children whose mothers took valproate while pregnant are more likely to have autism or an autism spectrum disorder. These children are also more likely to develop symptoms of attention deficit hyperactivity disorder (ADHD).
Janet Williams, INFACT - Foetal Anticonvulsant Trust, said she doesn't think "we're ever going to find out and pinpoint an actual number of children that's been harmed by this."
A Welsh Government spokesperson said: "We have great sympathy for the suffering and harm that has occurred to those affected by these issues in Wales. In the event that the UK Government accepts the recommendations we will of course be pursuing the best course to ensure affected people in Wales are not treated any differently."
A UK Government spokesperson said: “Our sympathies remain with those affected by sodium valproate and pelvic mesh and we are focused on improving how the system listens to patients and healthcare professionals, as well as introducing measures to make medicines and devices safer.”
“I am hugely grateful to the Patient Safety Commissioner and her team for their work on this important issue.
“The government is carefully considering the Patient Safety Commissioner’s recommendations and will respond to the report fully, in due course.”
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