Hormone Pregnancy Tests

Jane Stevenson Excerpts

Thursday 7th September 2023 Commons Chamber

[Jane Stevenson (Wolverhampton North East) (Con)]

I start by thanking the hon. Member for Bolton South East (Yasmin Qureshi) for all her work in raising the issue of Primodos, and Marie Lyon. Like the hon. Member for Ayr, Carrick and Cumnock (Allan Dorans), I knew nothing of Primodos when I was first elected in 2019. Shortly after my election, I met Marie with Charlotte Fensome, who joins us today in the Gallery. Charlotte’s brother Steven was a victim of Primodos and Charlotte’s family have been one of the affected families. Many of the words I am going to use today are Charlotte’s words, speaking of what her family has endured because of the advice of a GP to take Primodos. Not long after our meeting in Parliament, I met the Bagley family. Ted Bagley, Steven’s father, is here in the Gallery today and I welcome him to Parliament. This debate is long overdue. It is extremely important that, now legal proceedings are not ongoing, we can discuss what the Government can do for Primodos families.

The afternoon I spent in Wolverhampton North East with Ted and Pat Bagley, Charlotte, and Steven Bagley was a really enjoyable afternoon. I greatly valued the chance of meeting Steven and the Bagley family. It was a home filled with love. I have absolutely no doubt that Steven was aware that he was cherished and loved by his family every day of his life, but I left that home in absolute awe of the efforts to care for Steven made by the two parents in their 80s who were still entirely responsible for him. Let me read Charlotte’s summary of her family life:

“Mum was given Primodos by her GP in Wolverhampton in the early weeks of her pregnancy with my brother Steven…he was born in 1967 with severe brain damage. In many ways he had a difficult life. He had profound learning disabilities and was unable to speak, feed or wash himself. He was incontinent and wheelchair bound. He suffered violent seizures on a daily basis, due to a form of epilepsy that medicine was unable to control and that kept him awake at night. He needed twenty four hour care and my incredible parents cared for him with great difficulty, but with absolute devotion, at home full-time, from the day he was born until the day he died aged 53 years.

We are a close family and we all adored Steven. I know that despite his disabilities, he was happy in life and he felt loved. Seizures aside, he was always smiling and he had the most beautiful, expressive eyes that could tell you exactly how he was feeling. I’m sure that he understood far more than any professional gave him credit. He was a gentle man with a big personality and a devilish sense of humour, who loved being the centre of attention and enjoyed socialising. And although he may not have been able to talk, he was full of fun and made plenty of loud noises to compensate!

My parents were determined to give him a ‘normal life’ from day one, even though society was less accepting of disability…Steven went wherever we went as a family…on the dance floor…at parties…in restaurants…he travelled through Europe by car, flew on aeroplanes and sailed on ships. He loved listening to opera for hours with dad and was very partial to a McDonalds! He appreciated…life and did more in life than many people without his disadvantages.

The hardship has made my parents stronger despite the odds and this year they celebrated 62 years of marriage. To their credit, my own childhood was full of love, enjoyment and opportunity despite their difficult life. My sister Nikki and I were always incredibly proud to have Steven as our brother”.

I am in no doubt of that love for Steven, but the daily grind of looking after someone with such profound disabilities was awful to witness. Charlotte told me during my visit that because Steven’s epilepsy kept him awake at night, his parents had a round-the-clock watch. His mum Pat, in her 80s, sat up overnight with Steven, only sleeping when Steven’s father woke up in the early morning to take over the watch. The Cumberlege report gave Steven’s family some hope that finally help was on the way to support them in caring for Steven. That redress is what I want to speak about today.

Baroness Cumberlege says in her report that hormone pregnancy tests

“are not just a historic issue. We do not doubt the continuing psychological suffering caused by their use - indeed we have witnessed it on the faces and in the words of the families we have met; the sorrow and anger arising from a conviction that lives had been needlessly, and often irreparably, damaged, both physically and mentally; the impact of carrying a relentless sense of burning injustice for decades without resolution; parents of the affected children, deeply anxious about what will happen to their adult child when they are no longer there for them; mothers burdened by guilt at having taken the tablets. The extent of the suffering, endured over decades, must not be underestimated.”

The report calls for help for families to access support, and also for redress. Both are greatly needed, and I hope that the Government will respond positively to this debate. We have heard Members on both sides of the House speak of the impact that Primodos has had on families, and I am especially pleased that several have mentioned that no mother should feel any guilt about having taken it. It is crucial for every mother to know that she—like all of us when we see a GP—took the advice of medical professionals, whom we trust to know better than us and to be acting in our interests.

That redress would not cost a great deal in the overall scheme of Government spending. The Primodos families remaining are now in the low hundreds, not the many thousands. A discretionary award based on need would really help those families. When I asked Charlotte Fensome what the compensation and redress money would have allowed, she came back with several very manageable asks. The first was night sits to relieve her parents, who were in their 80s, of having to sit all night with Steven. The second was a choice of incontinence pads which were not available on the NHS. The third was continuity of domiciliary carers who could get to know Steven and understand his needs. The fourth was more suitable wheelchairs. The fifth was adult centre training to provide ways of occupying Steven, and the sixth was future care. That is the worry that families have. Primodos parents are getting older and older, and many of them worry about leaving behind a child who will be at the mercy of the state; we must give them reassurance. Finally, there was the difficulty in accessing help. The Government could accept that Cumberlege recommendation to give the families a contact point to help them to access the services that they so desperately need.

We have heard from many Members about the drugs fight in the courts, so I will not go over that ground. It was always a David-Goliath fight for the Primodos families, and I know that they feel exhausted. They have waited so long for redress; they have waited so long for help.

Steven sadly died on Boxing Day in 2020. He had been taken into hospital, having contracted covid from a visiting carer. His sister Charlotte, with typical determination, fought her way into the intensive care unit to be with her brother. It is too late for the Bagley family, but their greatest wish is for other families to have the support that they so severely and desperately needed.