Wigan mum who used hormone pregnancy test honoured by King for decades of campaigning for justice

Marie Lyon, chairman of the Association For Children Damaged by Hormone Pregnancy Tests, has been campaigning for decades for justice for people affected by the tests, including Primodos.

The Billinge 77-year-old has been awarded the British Empire Medal for “advocating for scientific research and improving patient safety for women”.

She said she accepted the award on behalf of association members and it was “recognition of what has happened”.

Tests were given to more than a million women from 1958 to 1978, but Ms Lyon said many were never told of the risks and were instructed to take the drug to find out whether they were pregnant.

They were withdrawn from the market in the late 1970s and manufacturers have faced claims they led to adverse outcomes including birth defects and miscarriages.

“The fact is that our families have been recognised as having suffered an injustice. I do feel it’s in recognition of what has happened,” she said.

Ms Lyon joined the association in 1978 and became chairman in 2012.

She said: “In 1970, I went to my GP and said, ‘I think I’m pregnant, I hope I am’. And he said, ‘Oh, well, we can soon find out about that. Just take these two tablets’.

“I expected either an examination or a urine test and they were never mentioned. It was my first child so I just thought, ‘This must be the way that you do it now’. So I did take them and I didn’t think anything about it.

“When Sarah was born in the October, her left arm below the elbow was missing, and I was just told, ‘this happens sometimes, don’t worry about it’.”

When Sarah was eight, Ms Lyon received a phone call asking if she would join the association.

“That is when I found out the tablets contained 40 times the strength of an oral contraceptive,” she said.

“I felt guilt straight away and thought, ‘Why the heck didn’t I ask’? and ‘If only had gone to a different doctor’.

“I joined the association when it started in 1978 and we literally went round with tin cans to try and raise funds.”

Campaigning efforts led to a report by the Commission on Human Medicines’ Expert Working Group in 2017, but it was dubbed a “whitewash” after it concluded the available scientific evidence at the time did not support “causal association” between the tests and birth defects.

A 2018 review, led by experts at the University of Oxford, concluded the “use of oral hormone pregnancy tests in pregnancy is associated with increased risks of congenital malformations”.

Despite this, families affected by hormone pregnancy tests were omitted from a review by the Patient Safety Commissioner about redress for victims of health scandals, published earlier this year.

Ms Lyon said: “Many, many times, the blows have come thick and fast, and I know so many people say: ‘give it up. There’s no point. Just let it go’.

“Well, how can I? It’s not just the safety of our families, it’s the safety of women in the future.”

On getting the award, she added: “I was stunned. I just didn’t think that this would ever come to me. I was absolutely, totally thrilled.”