Primodos patients ‘betrayed’ after being left out of health scandals redress report

Campaigners have accused the UK government of betraying them after a review of redress for victims of health scandals excluded families who may have been affected by the hormone pregnancy test Primodos.

A report published on Wednesday by the patient safety commissioner, Dr Henrietta Hughes, found a “clear case for redress” for thousands of women and children who suffered “avoidable harm” from the epilepsy treatment sodium valproate and from vaginal mesh implants.

But despite the commissioner wanting to include families affected by hormone pregnancy tests in her review, the Department of Health and Social Care (DHSC) told her they would not be included.

Primodos was an oral hormonal drug used between the 1950s and 70s for regulating menstrual cycles, and as a pregnancy test. Hormone pregnancy tests stopped being sold in the late 1970s and manufacturers have faced claims that such tests led to birth defects and miscarriages. Last year, the high court dismissed a case brought by more than 100 families to seek legal compensation owing to insufficient new evidence.

The Hughes report states: “Our terms of reference did not include the issue of hormone pregnancy tests. This was a decision taken by DHSC and should not be interpreted as representing the views of the commissioner on the avoidable harm suffered in relation to hormone pregnancy tests or the action required to address this.

“The patient safety commissioner wanted them included in the scope but, nevertheless, agreed to take on the work as defined by DHSC ministers.”

Marie Lyon, the chair of the Association for Children Damaged by Hormone Pregnancy Tests, said the families of those who took the tests felt “left out in the cold” and betrayed that they were not included in the commissioner’s review.

“I feel betrayed by the patient safety commissioner, by the IMMDS [Independent Medicines and Medical Devices Safety] review and by the secretary of state for health – all three have betrayed our families because, basically, they have just forgotten us. It’s a case of ‘it’s too difficult so we will just focus on valproate and mesh’,” Lyon said.

Prof Carl Heneghan, a professor of evidence-based medicine at the University of Oxford, who led a systematic review of Primodos in 2018, said: “It’s unclear to me how the commissioner can keep patients safe if they are blocked and don’t have the power to go to areas where patient safety matters.”

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Source: The Guardian, 7 February 2024