Primodos campaigners are ‘running out of time’ and the government ‘needs to act’
When Primodos campaigner Marie Lyon grabbed the microphone at the patient safety meeting in parliament, everyone took a deep breath. An onslaught was coming and we all knew it.
Not least the patient safety commissioner, Henrietta Hughes, who had produced a report calling for financial help to support the victims of two medical scandals.
Dr Hughes had just explained how the victims of vaginal mesh implants, left disabled by the product, and sodium valproate users whose children were harmed in the womb by the epilepsy drug, should both get urgent financial redress to help them with life-changing difficulties caused by “regulatory failures at every level”.
Her report claimed that the government’s failure thus far to create such a scheme was “unsustainable” and was “causing immense anxiety for harmed patients”.
Indeed, this had all been noted in 2020 by the Cumberlege review which also slammed government and regulators for failing to act.
However, the Cumberlege review had also said that the hormone pregnancy test Primodos caused “avoidable harm” and those affected should be subject to the same financial support.
When the Cumberlege review was published, the then health secretary Matt Hancock issued “a full apology” to all three groups, including Primodos, yet somehow this group of patients was omitted from the commissioner’s report.
Marie Lyon wasn’t an invited speaker, but she came to the meeting holding a speech and was determined to deliver it. Clutching the microphone, she demanded to know why her members had been left out.
She said: “For decades, Primodos has been publicly referred to as the forgotten thalidomide.
“Today I feel forgotten thalidomide could be referenced as the forgotten Primodos, forgotten by the patient safety commissioner … forgotten by the secretary of state for health, and I’m here to ensure they are never forgotten.”
When she finished, campaigners from the valproate and mesh groups applauded.
This is because they know how she feels and even though the patient commissioner is fighting for their hugely important causes, they don’t mind her feet being held to the fire, as there’s still a question over how much weight her report will carry in the corridors of power.
Dr Hughes’ answer to Mrs Lyon’s question hinted at the answer. She had wanted to include Primodos in her redress proposals, but the government had told her not to. She told the room that if she had tried to insist, it might have jeopardised the whole report.
In an interview with Mark Austin on Sky News, Dr Hughes explained that the Primodos families were “specifically excluded by the Department of Health” because “at the time litigation was under way”.
Primodos campaigners had indeed taken legal action, both against the government and the manufacturer, Bayer, who deny the link between the pregnancy test drug and malformations.
Last year, lawyers for the Department of Health and the pharmaceutical company successfully argued for the claim to be struck out.
Marie Lyon and her campaign group felt betrayed by a government that had at first apologised and then blocked their day in court. All three groups are conscious that when Baroness Cumberlege recommended redress, the initial answer from the government was an outright no.
So, what has changed? Dr Hughes says the government commissioned her report into valproate and mesh on the express agreement that it could not be ignored.
She told Sky News: “I made it clear I wouldn’t undertake this work which would put families through an emotional rollercoaster if there was no chance for redress at the end.”
She added that she would be “pressing the government for a quick response”. There’s no indication of one yet.
Responding to questions in the Commons, Health Minister Maria Caulfield reiterated that the government had “personally, as a government, commissioned that report for the patient safety commissioner to undertake to look at the options around redress” but she added only that the government would “look at the details closely and then report back to this house”.
After decades of campaigning, families have a chink of hope. Marie Lyon clearly isn’t giving up either and seems as urgent and vital as she ever was.
Why? Because her members are running out of time – several have died since the Cumberlege review, often because of the conditions they were born with.
Mesh and valproate campaigners have faced similar tragedies. And so the time for reports and reviews and ‘full apologies’ is over. The government needs to act.