Victims of epilepsy drug valproate and vaginal mesh should get compensation, government told
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.
“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. 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.
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
‘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.
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.”
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.”
It’s like The Godfather, one reformed drug trafficker tells me.
The mythical gangster film centred on an organised crime dynasty locked in a transfer of power.
Communities in Scotland currently have a front row seat to a new war of violence, torture, and taunts as feuding drug lords and notorious families grapple for control of Glasgow and Edinburgh.
There have been more than a dozen brutal attacks over the past six weeks – ranging from fire bombings to attacks on children and gun violence.
A firebomb attack in Scotland
Victims left for dead, businesses up in flames
Gangsters have filmed themselves setting fire to buildings and homes connected to the associates and relatives of their bitter rivals.
The main aim, they boast, is to “exterminate” the opposition.
The taunting footage, accompanied by the song Keep On Running by The Spencer Davis Group, has been plastered over social media as part of a deliberate game of goading.
A 12-year-old boy and 72-year-old woman were left for dead when teenagers wearing balaclavas burst into a home in north Glasgow.
Garages and businesses have gone up in flames. Shots were fired at an Edinburgh house.
Signals are being sent of who wants control of Scotland’s dark criminal underworld.
A firebomb attack that saw a man throw an incendiary device through a building window
The fire attack set to the song Keep On Running by The Spencer Davis Group
What’s caused the gang war?
The former director of the Scottish Crime and Drug Enforcement Agency, Graeme Pearson, explains how a “vacuum of leadership” is playing a part.
Last October, Glasgow-based cocaine kingpin Jamie Stevenson, known as The Iceman, was jailed after orchestrating a £100m cocaine shipment stashed in banana boxes from South America.
The mob leader was one of Britain’s most wanted, running his business like another on-screen criminal enterprise: The Sopranos.
The 59-year-old fugitive went on the run before eventually being hunted and apprehended by police while out jogging in the Netherlands.
Jamie Stevenson. Pic: Police Scotland
Pic: Crown Office
‘Old scores to settle’
But paranoia was running rife about how this notorious gangster could be brought down. Was there a grass? Was it one of their own?
It further fuelled divisions and forced new alliances to be forged across Scotland’s organised criminal networks.
It wasn’t until The Iceman case came to court that it was revealed an encrypted messaging platform, known as EncroChat, had been infiltrated by law enforcement.
It ultimately led to Stevenson pleading guilty.
Ex-senior drug enforcement officer Mr Pearson told Sky News: “It is a complex picture because you have got people who are in prison who still want to have influence outside and look after what was their business.
“On the outside you’ve got wannabes who are coming forward, and they think this is an opportunity for them, and you have got others have old scores to settle that they could not settle when crime bosses were around.”
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Graeme Pearson
Mr Pearson describes a toxic mix swirling to create outbursts of violence unfolding in Scotland.
He concluded: “All that mixes together – and the greed for the money that comes from drugs, and from the kudos that comes from being a ‘main man’, and you end up with competition, violence, and the kind of incidents we have seen over the past four to six weeks.”
New wave of violence ‘barbaric’
Glasgow man Mark Dempster is a former addict, dealer, and drug smuggler who is now an author and respected counsellor helping people quit drinking and drugs.
He describes the “jostle for power” as not a new concept among Glasgow’s high profile gangland families.
Mark Dempster
“There is always going to be someone new who wants to control the markets. It is like The Godfather. There is no difference between Scotland, Albania, or India,” he said.
Mr Dempster suggests a shift in tactics in Glasgow and Edinburgh in recent weeks, with 12-year-olds being viciously attacked in the middle of the night.
“It is barbaric. When young people, children, get pulled into the cross fire. It takes it to a different level.
“At least with the old mafiosa they had an unwritten rule that no children, no other family members. You would deal directly with the main people that were your opposition.”
Police Scotland is racing to get control of the situation, but declined to speak to Sky News about its ongoing operation.
It has been suggested 100 officers are working on this case, with “arrests imminent”.
But this is at the very sharp end of sophisticated criminal empires where the police are not feared, there are fierce vendettas and, clearly, power is up for grabs.
UK
Laws may need to be bolstered to crack down on exploitation of child ‘influencers’, senior MP suggests
Laws may need to be strengthened to crack down on the exploitation of child “influencers”, a senior Labour MP has warned.
Chi Onwurah, chair of the science, technology and innovation committee, said parts of the Online Safety Act – passed in October 2023 – may already be “obsolete or inadequate”.
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Experts have raised concerns that there is a lack of provision in industry laws for children who earn money through brand collaborations on social media when compared to child actors and models.
This has led to some children advertising in their underwear on social media, one expert has claimed.
Those working in more traditional entertainment fields are safeguarded by performance laws, which strictly govern the hours a minor can work, the money they earn and who they are accompanied by.
The Child Influencer Project, which has curated the world’s first industry guidelines for the group, has warned of a “large gap in UK law” which is not sufficiently filled by new online safety legislation.
Official portrait of Chi Onwurah.
Pic: UK Parlimeant
The group’s research found that child influencers could be exposed to as many as 20 different risks of harm, including to dignity, identity, family life, education, and their health and safety.
Ms Onwurah told Sky News there needs to be a “much clearer understanding of the nature of child influencers ‘work’ and the legal and regulatory framework around it”.
She said: “The safety and welfare of children are at the heart of the Online Safety Act and rightly so.
“However, as we know in a number of areas the act may already be obsolete or inadequate due to the lack of foresight and rigour of the last government.”
Victoria Collins, the Liberal Democrat spokesperson for science, innovation and technology, agreed that regulations “need to keep pace with the times”, with child influencers on social media “protected in the same way” as child actors or models.
“Liberal Democrats would welcome steps to strengthen the Online Safety Act on this front,” she added.
‘Something has to be done’
MPs warned in 2022 that the government should “urgently address the gap in UK child labour and performance regulation that is leaving child influencers without protection”.
They asked for new laws on working hours and conditions, a mandate for the protection of the child’s earnings, a right to erasure and to bring child labour arrangements under the oversight of local authorities.
However, Dr Francis Rees, the principal investigator for the Child Influencer Project, told Sky News that even after the implementation of the Online Safety Act, “there’s still a lot wanting”.
“Something has to be done to make brands more aware of their own duty of care towards kids in this arena,” she said.
Dr Rees added that achieving performances from children on social media “can involve extremely coercive and disruptive practices”.
“We simply have to do more to protect these children who have very little say or understanding of what is really happening. Most are left without a voice and without a choice.”
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The researcher pointed to one particular instance, in which children were advertising an underwear brand on social media.
She said: “The kids in the company’s own marketing material or their own media campaigns are either pulling up the band of the underwear underneath their clothing, or they’re holding the underwear up while they’re fully clothed.
“But whenever you look at any of the sponsored content produced by families with children – mum, dad, and child are in their underwear.”
Dr Rees said it is “night and day” in terms of how companies are behaving when they have responsibility for the material, versus “the lack of responsibility once they hand it over to parents with kids”.
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