Hormone Pregnancy Tests

Selaine Saxby Excerpts

Thursday 7th September 2023 Commons Chamber

[Selaine Saxby (North Devon) (Con)]

I thank the hon. Member for Bolton South East (Yasmin Qureshi) for securing this important debate and for her outstanding and ongoing work on the issue.

I am here today on behalf of my constituent Helen Barham, who since her birth has suffered from the brain disorder agenesis of the corpus callosum, hydrocephalus, damage to her skeletal system, and a brain haemorrhage at only 12 weeks, leading to epilepsy. She wears callipers and boots due to her feet deformities. She has had to have a number of major surgeries throughout her lifetime, including spinal surgery and a total hysterectomy. Despite all that, she still awaits compensation, which would allow her a personal carer and more comfort than she currently lives in.

Following Helen’s brain haemorrhage at 12 weeks in 1975, her mother Diane was told, in Diane’s words, that Helen would be spastic, mentally retarded, partially sighted and that, if the doctor was her, they would go home and forget about Helen, as she would be nothing but a cabbage. Diane and Helen have defied that awful prognosis. Helen has an active social life, with swimming, discos and holidays to Butlins.

Over the last almost 50 years, Diane has tirelessly kept fighting for Helen to have the best quality of life possible. However, ultimately the opportunity for a normal and healthy life was taken from Helen while she was still in the womb, because in 1974, Diane was given two pills following a missed period. It was only when Helen was three years old that a doctor from Great Ormond Street Hospital informed Diane that it was likely that those two Primodos pills were the cause of Helen’s disabilities.

Although Diane has dedicated much of her life to Helen’s care, as she has said, it has often come at a cost to her other children, her marriage, and her relationship with her parents. She is getting older and less able to look after Helen. All Diane asks is for Helen to receive compensation so that she can have someone to care for her all the time. Helen is currently in hospital after experiencing yet another complication following recent surgery to remove her gall bladder. Doctors were unable to remove Helen’s gall bladder fully and she is still struggling on the ward.

I welcome the Government’s apology to families by the former Health Secretary on behalf of the healthcare system, but it is financial assistance that families like Diane and Helen’s need. As has already been said, the Independent Medicines and Medical Devices Safety review led by Baroness Cumberlege found that the drug should have been removed from the market in 1967, and that both the state and the manufacturer had an ethical responsibility to fund a financial scheme for those harmed to help them with their care costs. Having been born in 1974, Helen certainly falls into that camp.

The Government are already working towards redress systems for valproate and vaginal mesh, as advised by the Independent Medicines and Medical Devices Safety review, but there has been no progress on a scheme for Primodos families. The 2018 systematic review of historical human studies by Professor Carl Heneghan clearly demonstrated that Primodos had a clear association with different forms of malformations, including musculo- skeletal, neurological and neurogenetical forms, all of which have affected Helen.

Modern science is also paving the way. Previously it was impossible to prove a direct link with human studies, as that would require testing the drug on pregnant women, but Professor Neil Vargesson has found similar outcomes to those for children born following their mothers being prescribed Primodos when testing the drug on zebrafish, chosen for their genetic similarity to humans. A new study has used chicken embryos and human cell lines, and even low doses produce developmental abnormalities. The full results are due later this year. Baroness Cumberlege felt that there was enough evidence of a link between Primodos and complications from birth for financial support in February 2018. Since then, the evidence has only grown.

I would like to reiterate to the Minister today how much difference the financial redress recommended by the IMMDS would make to Helen and Diane’s quality of life. Diane trusted her NHS doctor and our medical system, and now we need to support her and her family as they continue to face Helen’s complications together.