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.
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.
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“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.”
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. The manufacturer, Bayer, has always denied a causal link between the drug and birth defects.
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.
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.”
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.”
Image: 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.”
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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2:09
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.”
A 15-year-old boy who was operated on twice by a now unlicensed Great Ormond Street surgeon is living with “continuous” pain.
Finias Sandu has been told by an independent review the procedures he underwent on both his legs were “unacceptable” and “inappropriate” for his age.
The teenager from Essex was born with a condition that causes curved bones in his legs.
Aged seven, a reconstructive procedure was carried out on Finias’s left leg, lengthening the limb by 3.5cm.
A few years later, the same operation was carried out on his right leg which involved wearing an invasive and heavy metal frame for months.
He has now been told by independent experts these procedures should not have taken place and concerns have been raised over a lack of imaging being taken prior to the operations.
Image: Yaser Jabbar rescinded his UK medical licence last year. Pic: LinkedIn
His doctor at London’s prestigious Great Ormond Street Hospital was former consultant orthopaedic surgeon Yaser Jabbar. Sky News has spoken to others he treated.
Mr Jabbar also did not arrange for updated scans or for relevant X-rays to be conducted ahead of the procedures.
The surgeries have been found to have caused Finias “harm” and left him in constant pain.
“The pain is there every day, every day I’m continuously in pain,” he told Sky News.
“It’s not something really sharp, although it does get to a certain point where it hurts quite a lot, but it’s always there. It just doesn’t leave, it’s a companion to me, just always there.”
Mr Jabbar rescinded his UK medical licence in January last year after working at Great Ormond Street between 2017 and 2022.
The care of his 700-plus patients is being assessed, with some facing corrective surgery, among them Finias.
“Trusting somebody is hard to do, knowing what they have done to me physically and emotionally, you know, it’s just too much to comprehend for me,” he said.
“It wasn’t something just physically, like my leg pain and everything else. It was emotionally, because I put my trust in that specific doctor. My parents and I don’t really understand the more scientific terms, we just went by what he said.”
Doctors refused to treat Finias because of his surgeries
Finias and his family relocated to their native Romania soon after the reconstructive frame was removed from his right leg in the summer of 2021.
The pain worsened and they sought advice from doctors in Romania, who refused to treat Finias because of the impact of his surgeries.
Dozens of families seeking legal claims
His mother Cornelia Sandu is “furious” and feels her trust in the hospital has been shattered. They are now among dozens of families seeking legal claims.
Cyrus Plaza from Hudgell Solicitors is representing the family. He said: “In cases where it has been identified that harm was caused, we want to see Great Ormond Street Hospital agreeing to pay interim payments of compensation for the children, so that if they need therapy or treatment now, they can access it.”
Finias is accessing therapy and mental health support as he prepares for corrective surgery later in the year.
A spokesperson for Great Ormond Street Hospital told Sky News: “We are deeply sorry to Finias and his family, and all the patients and families who have been impacted.
“We want every patient and family who comes to our hospital to feel safe and cared for. We will always discuss concerns families may have and, where they submit claims, we will work to ensure the legal process can be resolved as quickly as possible.”
Image: Finias with his mother and sister
Service not ‘safe for patients’
Sky News has attempted to contact Mr Jabbar.
An external review into the wider orthopaedic department at the hospital began in September 2022.
It was commissioned after the Royal College of Surgeons warned the hospital’s lower limb reconstruction service was not “safe for patients or adequate to meet demand”.
The investigation is expected to be completed by the end of the year.
Sir Keir Starmer has said closer ties with the EU will be good for the UK’s jobs, bills and borders ahead of a summit where he could announce a deal with the bloc.
The government is set to host EU leaders in London on Monday as part of its efforts to “reset” relations post-Brexit.
A deal granting the UK access to a major EU defence fund could be on the table, according to reports – but disagreements over a youth mobility scheme and fishing rights could prove to be a stumbling block.
The prime minister has appeared to signal a youth mobility deal could be possible, telling The Times that while freedom of movement is a “red line”, youth mobility does not come under this.
His comment comes after Kaja Kallas, the EU’s high representative for foreign affairs, said on Friday work on a defence deal was progressing but “we’re not there yet”.
Sir Keir met European Commission president Ursula von der Leyen later that day while at a summit in Albania.
Image: Ursula von der Leyen and Sir Keir had a brief meeting earlier this week. Pic: PA
Sir Keir said: “First India, then the United States – in the last two weeks alone that’s jobs saved, faster growth and wages rising.
“More money in the pockets of British working people, achieved through striking deals not striking poses.
“Tomorrow, we take another step forward, with yet more benefits for the United Kingdom as the result of a strengthened partnership with the European Union.”
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Conservative leader Kemi Badenoch has said she is “worried” about what the PM might have negotiated.
Ms Badenoch – who has promised to rip up the deal with the EU if it breaches her red lines on Brexit – said: “Labour should have used this review of our EU trade deal to secure new wins for Britain, such as an EU-wide agreement on Brits using e-gates on the continent.
“Instead, it sounds like we’re giving away our fishing quotas, becoming a rule-taker from Brussels once again and getting free movement by the back door. This isn’t a reset, it’s a surrender.”
Roman Lavrynovych appeared at Westminster Magistrates’ Court on Friday and was remanded in custody.
Officers from the Metropolitan Police’s Counter Terrorism Command led the investigation because of the connections to the prime minister.
Emergency services were called to a fire in the early hours of Monday at a house in Kentish Town, north London, where Sir Keir lived with his family before the election.