Hormone Pregnancy Tests

Joan Ryan Excerpts

Thursday 14th December 2017 Commons Chamber

[Joan Ryan (Enfield North) (Lab)]

I congratulate the right hon. Member for Hemel Hempstead (Sir Mike Penning) on securing this debate. Like many Members, I represent families who strongly believe that their lives were forever changed because of the drug Primodos.

Today I speak on behalf of my constituents Chris Gooch and her daughter Emma Gooch. They have given me permission to share their story about how hard life has been over the past four decades, their criticisms of the expert working group’s report, and why they will continue to fight for justice, and they are with us here today.

In June 1970, Chris Gooch was prescribed Primodos by her GP to find out whether or not she was pregnant. Like any of us, Chris trusted the words of her GP and had no idea that the drug might be unsafe, or that it had been linked to deformities. It was only when Chris’s daughter, Emma, was born seven months later on 28 January 1971, that she was found to have limb deformities in her hands and feet, with both sets of fingers foreshortened and her toes webbed and foreshortened. Her mum, Chris, told me about how Emma has struggled to live with those deformities for her entire life. She said:

“There are many things that Emma would have liked to have done, like playing the piano or guitar, but she has been unable to do so because of limited mobility in her hands. This also came to impact her education and at secondary school she became school-phobic and was physically sick every morning before going to school. Emma has always suffered from severe back problems and has to live in intense pain all the time. She has sought treatment and scans confirmed that she has spinal deterioration, for which she was offered a spinal fusion. This only had a limited chance of success and risked making her condition worse. Emma refused this and is trying to come to terms with her long-term prognosis. She can’t work full time, has to pay for all her medications and has even been refused a blue badge, despite having to use a stick to walk and having no proper fingers or toes. Emma will be 47 next month and can now only manage to work for three days a week and even this she finds extremely draining. She is worried about her ability to keep working in the future, and the implications this has for her financially and socially.”

When I met Emma, she told me:

“Myself and many others have to live with the devastating results of our mothers being given hormone pregnancy tests like Primodos. Whilst the effects on me were much less severe than on some victims, I was born with very specific deformities which I have only ever seen shared by fellow Primodos victims, so in my mind this can be the only possible cause.”

[Tom Tugendhat (Tonbridge and Malling) (Con)]

The right hon. Lady is speaking very powerfully. Does she agree that there are many who are not as severely affected as her constituent, about whom she speaks so courageously, but who are similarly affected and nevertheless feel great pain? I speak of people I have the privilege to represent.

[Joan Ryan]

I absolutely agree. Members across the Chamber today have given examples, but there are many victims with different levels of disability, illness and deformity as a result of this drug.

When I asked Chris and Emma what they thought about the expert working group’s report and how the inquiry process had been handled over the past three years, their criticisms could not have been clearer. Chris told me:

“I feel angry that they treated us like idiots. We have been treated appallingly. The Expert Working Group produced a report in October and then, following a meeting with our Chair, Marie Lyon, they removed some material and re-issued it a month later. They said it was to make it more readable. They found no causal link, which they weren’t even requested to look for. They only gave us a day’s notice to organise a visit to hear the report’s findings and I am sure that is because they hoped no one would turn up to hear them. Now nearly 50 years on, our children, the ones who are still alive, are still suffering. I am angry that for Emma, and for many other members of the Association for Children Damaged by Hormone Pregnancy Tests, life is a constant struggle and we still haven’t really been heard.”

Emma herself told me that she

“cannot help but feel angry that for decades we have waited for an independent and unbiased enquiry, but the Expert Working Group’s obviously flawed report feels like an attempt to discredit us and instead protect the powerful companies and authorities that were at fault.”

Since I was first made aware of the issues surrounding the drug Primodos, I have been reminded of the thalidomide and contaminated blood scandals. I am reminded of the fact that it took decades of tireless campaigning before the truth and natural justice were reached. The inquiry has been accused of failing to consider all the evidence fairly, failing to have the trust and confidence of the victims for whom it was set up, and failing to be transparent and open in its due process. The inquiry failed to consider any evidence regarding systematic regulatory failures of Government bodies at the time. Campaigners have widely dismissed the inquiry as “seriously flawed”. I therefore join the cross-party calls for a public inquiry into the use of Primodos and its connection to deformities and other birth defects. I shall end by once again quoting the words of my constituent Emma Gooch, as I believe that her determination will be shared by Members on both sides of the House. She said:

“Sadly it is too late for some, but the victims and parents still deserve justice and we will continue to fight for it.”