TWO mums from the York area have told how their children’s lives have been devastated by the ‘worst drugs scandal since Thalidomide.’
Terri Gibson,of Holme-on-Spalding-Moor, and Jane B, of York, are amongst about 20,000 mothers nationwide who were prescribed an epilepsy medication during their pregnancies and whose children are thought to have suffered physical deformities and neurological problems as a result.
They were both given the anti-convulsant drug sodium valproate, even though medical regulators were warned years earlier that it could be dangerous to unborn children.
Terri said her son Jack Berry, now aged 20, struggled to survive after birth because his lungs hadn't developed properly.
Jack also had a heart condition which later required open heart surgery, has needed other ops over the years, has unusually large feet and very bendy joints, and has autism.
“Jacks developmental delay and lack of social skills led to him being severely bullied at school, and he became extremely anxious and nervous, leading to mental health problems,” she said.
Terri said experts had confirmed his condition was caused by her use of sodium valproate when she was pregnant.
She said the drug had been an effective treatment for her epilepsy since she was a young woman but, had she been given any warning it might be dangerous for her unborn baby, she would have stopped taking it '100 per cent.'
She said compensation should be paid to help with care for Jack throughout his life. " I worry about what will happen to Jack when I am not here," she said. "I feel pure guilt, but to think I was given it without warning when they knew it could be dangerous is absolutely disgusting. It's the worst drugs scandal since Thalidomide."
Thalidomide was the anti-sickness drug that caused deformities in thousands of babies after it was licensed in the UK in the 1950s.
Jane said her York daughter, now 35, had grown up suffering from an horrendous range of physical and mental health problems caused by the drug, including a cleft palate, hearing problems,, problems with her hands and feet, shaking akin to seizures, OCD, autism, chromosomal disorder and thyroid issues.
She said her health problems and lack of social skills led to her being severely bullied at school, and she became extremely anxious and nervous, leading to severe behavioural problems.
"My daughter, now in her 30's, lives independently on benefits but struggles every single day, both financially and mentally," she said. "She is unable to work due to her health issues. Her anxiety stops her from going out anywhere and socialising, becoming very lonely and isolated at times.
"It's been devastating. It's devastating for all children affected who carry life long disabilities. As a mother, I carry so much guilt.
"It is now time the Government accepted responsibility for information kept from us about sodium valproate and the harm this medicine has done to all our children."
The Department for Health and Social Care said it offered its 'deepest sympathies' to all those affected by sodium valproate and it had taken action to ensure no one else went through a similar experience.
“We are working closely with NHS Resolution to establish a single gateway for patients who wish to bring a claim," said a spokesperson.
"This will provide greater clarity and ensure they have access to the information they need when considering whether and how to bring a claim for compensation.
“Patient safety remains a priority and that is why we will be appointing the first Patient Safety Commissioner for England, to improve how the system listens to patients.”
Dr Alison Cave, Chief Safety Officer at the MHRA (Medicines and Healthcare products Regulatory Agency), said valproate use in pregnancy carried significant risks of harm to the baby and should not be taken by any individual of child-bearing potential unless they had a pregnancy prevention programme in place, which includes use of effective contraception.
"These are important regulatory requirements under which healthcare professionals are responsible for prescribing valproate safely. Every year, every woman on valproate needs to sign an annual risk acknowledgement form together with their healthcare professional, as her circumstances regarding the risk of pregnancy may change."
*Have you also been affected by the sodium valproate scandal? Email mike.laycock@thepress.co.uk.
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