Diethylstilbestrol: Intergenerational Impact
Debate between Jessica Toale and Connor Rand(1 month ago)
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Jessica Toale
Of course. Recordkeeping is one of the issues we face as a campaign group. I know the Department of Health and Social Care is looking at that, and I will come on to that issue later in my remarks.
Limited studies have been done on DES sons, but they suggest that these men face an increased risk of genital abnormalities and infertility. In May 2026, Maxwell Samuda became the first man to speak out openly about the effects of the scandal on him and his family, and I pay tribute to him. There are serious, unresolved questions about the second and third generations—the grandchildren. That is important, because this is not history or a scandal of the past; it is live and a continuing injustice to these women and their families.
People affected by DES are still living with the consequences today. Some are discovering later in life that health problems they have endured for decades may be connected to a drug that their mother took and was prescribed before they were born. Those who suspect DES exposure often find that doctors, clinicians and the wider health system have little or no awareness of it. That really matters, because for too many DES survivors, the harm has been compounded by the disbelief that they face. They have been told that their symptoms are unrelated and not to worry. They have been sent away, ignored, dismissed or left to piece the evidence together for themselves. Anne-Marie, who is here today, said that she had to buy her own medical encyclopaedia just to find out what was wrong with her.
Sadly, that is part of a much wider pattern that we see in women’s health, which has been poorly understood for generations and continues to be poorly understood today. Women’s pain is too often minimised. Their symptoms are normalised or ignored. Reproductive health is often treated as something that is niche, too complicated, embarrassing or somehow secondary, and it is not given the seriousness that it deserves. Women are not listened to and their concerns are dismissed until the evidence is too impossible to ignore. The history and present experience of DES is part of that wider system and failure, and, even now, we do not have the systems in place to properly support those affected.
One of the most worrying examples of that is in screening. Current routine smear testing for cervical cancer is designed primarily to deal with and detect changes linked to HPV. It does not reliably detect clear cell adenocarcinoma—the rare cancer associated with DES exposure. That means many DES daughters may believe that they are being adequately screened, but in fact the very cancers for which they have an increased risk will not be picked up through the standard process. Crucially, they need access to advanced screening for a much longer span of years than most women do.
A truly heartbreaking experience of that was the experience of Charly, who is in the Gallery today. She is a DES daughter and was diagnosed with clear cell adenocarcinoma in her cervix and uterus at the age of eight; she was given a hysterectomy at the age of nine. We know that standard breast cancer screening does not pick things up and is not adequate for women who face DES exposure.
Many women bear not only the emotional burden of uncertainty because of DES, but a financial burden, self-funding annual scans as a precautionary measure and undertaking fertility treatments. Today, in the meeting with the Minister, Juliette described the range of tests she undergoes every year at large personal expense and the lack of fairness for people who cannot afford to do so. That is unacceptable, which is why targeted screening and specialist monitoring for those at risk is so important. People who are affected need accurate information, proper care, and the chance of early diagnosis.
When I first heard Jan’s story, I had to act, and as a nation, we have a unique responsibility to act.
Mr Connor Rand (Altrincham and Sale West) (Lab)
I thank my hon. Friend for the powerful speech she is making, and for her campaigning work on this really important issue. I recently met my constituent Susannah, who is a victim of the DES scandal. She spoke movingly about the impact it has had on her life—20 gruelling operations since she was a teenager, precious time with her friends and family lost and the shadow of a life-threatening illness, because of course as a DES sufferer, she is 40 times more likely to suffer from cervical cancer. Does my hon. Friend agree with Susannah and me that the Government should very carefully consider the merits of a full public inquiry into this scandal?
Jessica Toale
I thank my hon. Friend for his intervention. I have also met Susie—she is a doughty campaigner and a real tribute to the movement. I will come on to some of the calls of the DES Justice campaign shortly.
The reason I think we as a nation have a unique responsibility to act is that DES was developed here in the UK, using public money. I am just going to let that sink in for a minute. It was not patented, meaning that it could be used widely, and it was. Despite the evidence of harms, the Medicines and Healthcare products Regulatory Agency still has not shown us any evidence of when it officially advised against the use of DES.
In July last year, I co-ordinated a cross-party letter signed by 37 Members of Parliament, calling for recognition and an apology for those affected by DES. Since then, those affected have come together to establish the DES Justice campaign, and I pay tribute to all the brave men and women who have come forward to share their stories. I know how painful and personal this is, and I know that for many, speaking out means reliving a trauma that has shaped their whole life. I also want to acknowledge Clare Fletcher and the DES campaigners who have worked tirelessly for recognition, often with little support and against huge institutional silence, and I thank Sarah Corker and ITV News for their investigation, which helped bring the scandal to public attention and forced institutions to begin answering questions that were left unanswered for decades.
That co-ordinated campaigning has paid off. In September, the MHRA admitted that it had made inaccurate statements for up to 25 years about when DES was withdrawn in Britain and apologised. In November, the former Health Secretary, my right hon. Friend the Member for Ilford North (Wes Streeting), acknowledged the suffering of DES-affected families and apologised. This was a huge step; it was the first time that many campaigners felt that the state had begun to recognise what had happened to them. That apology matters, but it cannot be the end of the matter, because for people like Jan—who has campaigned for more than 40 years—there must now be action.
The DES Justice campaign is calling for the Government to take five clear steps. The first of those steps is to commit to uncovering the truth about what happened, including through a full, judge-led statutory inquiry. The second is to support research into the long-term and intergenerational effects of DES; the third is to raise awareness of DES among NHS professionals; the fourth is to assess the feasibility of tracking and informing those potentially exposed to DES; and the fifth is to introduce targeted screening and monitoring for those at risk.
Those asks are reasonable, practical and necessary, because while some progress has been made, it remains nowhere near enough. We need updated and accurate information on the NHS website, so that people searching for DES are not left confused, frightened, or dependent on campaign groups for basic fasts. We need better information flows to GPs, gynaecologists, oncologists, fertility specialists and other NHS professionals. We need DES to be included in medical training and continuing professional development, so that clinicians know what it is, what the risks are, and how to support people who have been exposed. We need clear guidance on screening and monitoring, especially given the limitations of routine smear testing.
We also need a serious effort to understand whether and how those at risk can be identified, and those affected informed. I recognise that this is difficult—many of the records are old, and some have been lost or destroyed or were never kept properly. Some people will not know whether their mothers took DES, and some mothers may no longer be alive to be asked, but difficulty cannot be an excuse for inaction.
There are people who may be at risk today and do not know it. There are women who believe they are protected by the smear test, but they need specialist monitoring. There are families living with unexplained patterns of gynaecological problems—infertility, pregnancy loss or cancer—without even ever knowing that DES could be part of the picture.
Oral Answers to Questions
Debate between Jessica Toale and Connor Rand(1 month ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Jessica Toale (Bournemouth West) (Lab)
Mr Connor Rand (Altrincham and Sale West) (Lab)