Campaigners found to have been harmed by medical products have written to the health secretary warning that government inaction is “causing pain and destroying lives” by ignoring review recommendations.
Some 18 months ago, an independent review recommended financial help for people damaged by some products and drugs that had been prescribed by UK doctors.
The government – which set up the Independent Medicines and Medical Devices Safety Review in the first place – has chosen to ignore several of its recommendations.
Alleged victims of vaginal mesh, and the drugs valproate and Primodos, have written to Health Secretary Sajid Javid and Maria Caulfield to say they feel ignored.
Ms Caulfield, a health minister, was responsible for implementing the review.
The letter states: “Our members gave evidence to the two-year-long review, sometimes travelling long distances, often with disabilities.
“Families shared intimate details of their medical problems, their daily struggles, their difficulties parenting, sometimes even their sex lives. The panel, led by Baroness Cumberlege, was set up by the government to listen, assess and direct policy towards the best course of action.
“What was the point of this exercise and the hard work of the panel, if their key recommendations are then ignored by the government?”
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What the report found
The Cumberlege review found those affected by pregnancy test drug Primodos and epilepsy drug valproate, both alleged to damage babies in the womb, suffered “avoidable harm” and that the same was true of many women who had vaginal mesh implants.
The review team said that “the healthcare system is disjointed, siloed, unresponsive and defensive”.
It called for a system of redress to help affected families deal with their problems.
Lisa Hurton’s 10 year-old son, Kieran, was found to be autistic after she took sodium valproate while pregnant.
She told Sky News: “If someone has done wrong, there is blame there and they should be putting this right.
“It’s not about full blown compensation and things, this is about our children and how they’re going to be when we’re not here. That’s our greatest worry as a family.”
Criticism from former prime minister
Theresa May, who commissioned the review as prime minister, said in a recent parliamentary debate that “lives have not just been changed, but significantly damaged”.
She said: “People have suffered physically, mentally, socially and often economically.”
Mrs May added that people “suffered constant rejection from the state – by the NHS and government, the very bodies that should have been there to support them.
“The longer it takes the government to fully implement the recommendations of the Cumberlege report, the more rejection these people suffer. Every week that goes by is a further rejection, because the report was very clear: action needs to be taken.”
At the same Westminster Hall debate, earlier this month, Conservative MP Sir Mike Penning said: “What is the department waiting for, like they were with thalidomide, for these people to die?”
Almost 20 people have died since publication
Eighteen members of the Association for Children Damaged by Hormone Pregnancy Tests have died since the review was published.
Steven Bagley was an alleged victim of the drug Primodos who was left disabled after his mother used the drug. He died in December 2020, six months after the Cumberlege report.
His sister Charlotte Fensome told Sky News: “They had those six months to make his life a bit more comfortable, and they failed him, again.
“He was 53 and he was failed from his conception to his grave, by successive governments. And the last six months was this government. And it’s just unforgivable.”
In the letter to the government, campaigners say: “The decision not to offer an agency for redress (Cumberlege recommendation 3) means that the review has lost its teeth.
“Still, no one is facing consequences of medical failures other than the patients. At a time when the public is being asked to put its faith in vaccines, this is a bad look for the government.”
Government ‘too slow to act’ helping victims of Primodos
Kath Sansom, of the campaign group Sling the Mesh, said: “Women must dutifully accept their health has been irreversibly shattered by a medical product they were told was safe, some now needing a disabled blue badge, and they must put up and shut up.”
The government response
The Department of Health has implemented some of the Cumberlege recommendations, and said: “We cannot ignore the fact that this report is one of several independent reports and inquiries to have concluded that our healthcare system disproportionately fails to listen to women and keep them safe.
“This government is determined to change this, not least through our work to develop the first ever Women’s Health Strategy for England. This report is a powerful call to action, and we are determined to deliver meaningful change through the government’s response.”
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