Chloe Keedy reports on the thousands of women who could now receive compensation following the sodium valproate and pelvic mesh scandals.
Words by Will Tullis
Thousands of women and children affected by two separate medical scandals – one involving the epilepsy medication sodium valproate, and another involving vaginal mesh used to treat prolapses – have a “clear case” for compensation, a new report has said.
The review by England’s Patient Safety Commissioner highlights how thousands of women’s lives were “destroyed” due to pelvic mesh, and thousands of children “will never be able to live independent lives” after being exposed to sodium valproate.
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.
Vaginal mesh implants have been used to treat urinary and gynaecological conditions, but have caused debilitating harm to some women.
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.
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“My report could not be clearer – the case for redress has been made,” Dr Hughes said.
“It highlights in detail the daily problems that impact on those who have been harmed, who have seen their lives destroyed by pelvic mesh, and the children who will never be able to live independent lives,” she added.
Emma Friedmann has epilepsy and had been told by her neurologist there was “minimal” risk of taking sodium valproate. Her son Andy, now 25, was then born with foetal valproate syndrome. Andy has dyspraxia and autism and needs full-time care.
“I feel guilty for having epilepsy, I feel guilty for taking the drug, I feel guilty for trusting my neurologist,” Emma told ITV News after attending an event in Parliament for the report’s publication.
“We have to get this fixed we are a developed nation, we should not be leaving these families to suffer,” Emma said.
“I feel reassured that these things have come out in the open,” she added.
England’s Patient Safety Commissioner, Dr Henrietta Hughes, wanted to include patients that had suffered avoidable harm as a result of hormone pregnancy tests, including Primodos, in her review but was told by the Department of Health and Social Care (DHSC) they would not be included.
Marie Lyon, chairwoman of the Association For Children Damaged by Hormone Pregnancy Tests, said that families who took hormone pregnancy tests between 1958 and 1978 felt “betrayed”.
She said many were never told of the risks of Primodos and were instructed to take the drug – which is 40 times the strength of an oral contraceptive pill – by their GPs as a way of finding out whether or not they were pregnant.
Hormone pregnancy tests were withdrawn from the market in the late 1970s and manufacturers have faced claims that such tests led to a number of adverse outcomes including birth defects and miscarriages.
Ms Lyon, 77, said that families feel as though they have been “left out in the cold”.
“I feel betrayed by the Patient Safety Commissioner, by the IMMDS review (Independent Medicines and Medical Devices Safety Review) and by the secretary of state for Health – all three have betrayed our families because basically they have just forgotten us,” Ms Lyon said.
“It’s a case of ‘it’s too difficult so we will just focus on valproate and mesh’.”
In response to the report, Women’s health minister, Maria Caulfield MP said the government is “focused” on improving how the system listens to patients and healthcare professionals and introducing measures to make medicines and devices safer.
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