Victims of epilepsy drug and mesh should get compensation, ministers told

UK

The government is being told to urgently set up a financial package to help patients damaged by epilepsy drug valproate and vaginal mesh.

Calculations for the cost of the package amount to half a billion pounds – just for the initial payments, according to a report by the Patient Safety Commissioner for England, Dr Henrietta Hughes.

Previously, the government rejected calls for such a scheme, but Dr Hughes’s report says that position “is unsustainable” and “is causing immense anxiety for harmed patients”.

Based on the needs identified by patients in a survey, valproate victims would need an initial payment of £100,000 per patient, and vaginal mesh victims would need £20,000.

Because more mesh victims answered the survey, this amounts to an average of £25,000, for an estimated 20,000 claimants, adding up to half a billion pounds.

Still from report by Jason Farrell, Home editor. The government is urged to set up a financial package to help patients damaged by Valproate and Mesh.

However, there would then be a secondary payout based on assessments of future needs.

Dr Hughes told Sky News: “The need for redress is now. I want the government to get on with it, to set up a scheme for patients and start making payments in 2025.”

The report says: “The purpose of the Interim Scheme is to offer patients an initial, fixed sum in recognition of the avoidable harm they have suffered as a result of system‑wide healthcare and regulatory failures.

“The purpose of the Main Scheme is to recognise that the system-wide healthcare and regulatory failures caused different levels of harm to each patient.

“Consequently, the Main Scheme will require a more individualised approach with greater evidential requirements that will require more time to develop.”

Ultimately, this could also mean even larger sums of money.

Primodos not included

Dr Hughes was asked by the Department of Health to explain how to meet the needs of patients who have suffered “avoidable harm” identified by Baroness Cumberlege in her review into mesh, valproate and Primodos published in 2020.

However, controversially, Dr Hughes was told by the government not to look at a scheme for children allegedly damaged by Primodos.

Dr Hughes told Sky News: “I wanted to include the Primodos families and I was told that the government didn’t want them included.

“I said right from the start that if you have an independent review, the government should accept all the recommendations. Cumberlege recommended redress for victims of Primodos and I believe the same.”

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Primodos was a drug given to women as a pregnancy test in the 1960s and 1970s which is alleged to have caused multiple forms of malformations to the foetus in the womb.

Valproate is an epilepsy drug that can cause what is called Valproate Syndrome in children born to women using the drug, which includes distinct facial dysmorphism, congenital anomalies, developmental delay and autism.

Pelvic Mesh implants were given to women to support internal organs after childbirth or a hysterectomy – but have left an estimated 10,000 people with disabilities as the mesh cut into their organs and nerves.

Patricia Alexander. Still from report by Jason Farrell, Home editor. The government is being urged to set up a financial package to help patients damaged by Valproate and Mesh.
Image:
Patricia Alexander

Patricia Alexander, 46, took valproate during both her pregnancies, not knowing it would cause her daughter and son to have autism and life-long learning difficulties.

She told Sky News: “We’re talking about reminding them how to use the toilet properly, washing their hands, drying their hands, having a wash, brushing their teeth… things like this that children would have learned when they’re very small, we’re still having to do every day.”

Her daughter Amelie is 14 and her son Joseph is now 23, but he still needs warning about cars when crossing the road.

Patricia added: “Our biggest worry is what will happen to children when the time comes that we’re not here to look after them.”

It is more than six years since Sky News revealed how regulators knew back in the 1970s that Valproate posed a risk, but for years chose not to tell patients.

Patricia Alexander and son Joseph. Still from report by Jason Farrell Home editor. The government is being urged to set up a financial package to help patients damaged by Valproate and Mesh.
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Patricia Alexander and son Joseph

‘Huge step forward’

Emma Murphy, founder of valproate support group INFACT, told Sky News this report was “a huge step forward,” adding: “The report outlines a number of options and ways the government could now implement redress but this does mean our families are again having to wait for the government to decide what to do.

“INFACT strongly urge the government to act upon this report that they requested and deliver justice to Britain’s valproate children, just like they did with Thalidomide babies.”

Sky News has also campaigned for years for recognition of the harms caused by mesh implants.

Natasha Brown. Still from report by Jason Farrell, Home editor. The government is being urged to set up a financial package to help patients damaged by Valproate and Mesh.
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Mesh victim Natasha Brown speaks to Sky’s Jason Farrell

Mesh victim Natasha Brown described the pain as “like there is a piece of wood, a pencil, wedged in there.”

She now walks with a crutch, has had to give up her cleaning business, and is dependent on her two young daughters.

She said: “I don’t want them to be my carers. It’s really hard when you’re cooking tea and you have to get your 12-year-old to lift something out of the oven for you, and seeing my neighbours take them on long walks or taking them kayaking, and all I get is the photographs at the end.

“I want to be doing that. I’m only 49. I’m supposed to be doing those things for them, and with them. It has taken our lives away, and that’s wrong.”

Natasha Brown. Still from report by Jason Farrell, Home editor. The government is being urged to set up a financial package to help patients damaged by Valproate and Mesh.
Image:
Ms Brown now walks with a crutch due to the pain she suffers

‘Gaslit for years’

Kath Sansom, founder of campaign group Sling The Mesh, said: “While we are pleased that this report validates the suffering of thousands of women – many who have lost jobs, pensions, homes, partners, and live in constant pain – there are also concerning elements to it.

“Most notably, the initial sum of £25,000 for mesh is disappointingly low. We hope second-stage payments for women directly harmed will compensate for that.

“All women harmed by pelvic mesh trusted they were having a gold standard surgery, with little to no warning of risks from their surgeon, and as a result experienced irreversible, life-altering complications.

“Many were then gaslit for years, and, just like the post office scandal, told they were the only ones suffering, forcing them to suffer in silence.

“Finally, our hearts go out to the Primodos families who have been campaigning since the 1960s and 70s, who have no positive financial redress news at all in this report.”

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From February 2022: Epilepsy drug victim: ‘Government hid this’

Marie Lyon from the Association for Children Damaged by Hormone Pregnancy tests said: “The PSC has failed to engage with our families to ensure their patient safety needs are met.

“For more than five decades, our families have had sole responsibility of both the physical and mental health of their children. Shameful.”

Women’s health minister Maria Caulfield 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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