Imagine the horror of finding out that a supposedly safe drug prescribed during pregnancy has unleashed a wave of devastating health issues across generations—welcome to the heart-wrenching saga of DES, often called the 'hidden thalidomide,' where an ITV News exposé has ignited demands for a full public inquiry.
Following an exhaustive year-long investigation by ITV News, hundreds of women impacted by this now-prohibited medication, which was administered through the NHS, are banding together to push for government accountability. These brave individuals, many of whom suffered in silence for decades, have formed DES Justice UK to advocate for an official probe and rightful compensation. The scandal's enormity, uncovered by Social Affairs Correspondent Sarah Corker, reveals how this synthetic hormone wreaked havoc on families, mirroring the infamous thalidomide disaster but staying largely out of the spotlight.
Known scientifically as Stilbestrol or more commonly as DES (short for Diethylstilbestrol), this man-made estrogen was developed in Britain back in 1939. Between the 1930s and 1980s, an estimated 300,000 women on the NHS received it to combat various pregnancy-related challenges, such as repeated miscarriages. Initially hailed as a miracle cure, DES was later exposed for its sinister consequences: it dramatically raised the odds of rare cancers and infertility in the offspring of those who took it. Think of it as a well-intentioned intervention that turned into a generational nightmare, affecting not just mothers but their children and even grandchildren.
Fueled by ITV News' revelations, which spotlighted the healthcare system's repeated failures to heed early safety alerts about the drug's dangerous effects, more than 300 survivors have united under DES Justice UK. These powerful reports shed light on how authorities dismissed warnings, allowing the harm to persist unchecked. But here's where it gets controversial: despite the outcry, the response from officials has been measured, raising questions about whether this is true justice or just another bureaucratic delay.
In a pivotal move, Health Secretary Wes Streeting has instructed NHS England to collaborate urgently with regional cancer networks. The goal? To educate GPs on DES's long-term impacts and ensure that eligible individuals don't miss out on crucial additional screenings. This step acknowledges the issue but leaves many wondering if it's enough to address the scale of the betrayal.
Take Mary Stuart, now 83, who was given DES pills in Newcastle in 1966 after enduring numerous miscarriages. Her daughter, Helen Scanlan, born in 1967 at 58, didn't realize the toll until her teens. Helen, who has battled relentless pain since age 14, was eventually diagnosed with a malformed uterus and later cervical cancer. 'The agony became unbearable, so we opted for a total hysterectomy to eliminate the threats,' Helen shared with ITV News. 'Even after 20 years, the pain lingers, and now I'm anxious about menopause bringing new risks. I'm heartbroken not to have children like my sisters, though I'm grateful for my stepdaughter—I feel like I've lost so much.'
Mary, overwhelmed by remorse, confides to ITV News that she 'carries guilt every day,' regretting her decision to take the tablets advised by doctors to boost her chances of carrying a baby to term. 'I trusted the experts and followed their guidance, but it's haunted me for over 50 years,' she says. 'I didn't know the dangers, and now I can't undo it.' These stories highlight the emotional wreckage, where mothers grapple with self-blame while daughters face lifelong struggles. And this is the part most people miss: the ripple effects extend beyond physical health, shattering dreams of family and normalcy.
Victims sharing their experiences with ITV News paint a picture of ongoing fears, wondering if their ailments stem from DES exposure. For newcomers to this topic, DES works by mimicking estrogen, but in pregnant women, it disrupts fetal development, leading to abnormalities like those seen in Helen's case. This isn't just about isolated tragedies; studies indicate a 30% elevated breast cancer risk for mothers who took it, and daughters—termed 'DES daughters'—face heightened chances of rare vaginal or cervical cancers that standard tests miss.
Clare Fletcher, a partner at Broudie Jackson Canter representing UK DES victims, passionately argues for change. 'The government must own up to past errors and establish a formal public inquiry to unravel how this catastrophe unfolded,' she insists. 'It's unacceptable that survivors have been dismissed, doubted, and shamed when they merely seek fairness. They deserve transparency and recompense.' Fletcher describes it as a colossal regulatory breakdown, prompting us to ask: How could such a widely prescribed drug evade scrutiny for so long?
DES, or Diethylstilbestrol, was hailed as a groundbreaking estrogen when invented in 1939. For those unfamiliar, synthetic hormones like this are designed to replicate natural ones but can have unintended side effects, especially during critical periods like pregnancy. Pregnant users might face up to a 30% higher breast cancer risk, while their daughters encounter rare cancers not detected by routine screenings. Gynecologists, including Dr. Wael Agur, are urging revised guidelines for yearly checks and specialized tests. 'Standard cancer screenings catch common types,' Dr. Agur explains, 'but DES-exposed women need more intensive monitoring to spot these uncommon threats.'
DES Justice UK held their inaugural meeting in the Houses of Parliament on Tuesday, launching officially and connecting with 37 MPs pressing for action. Organized by Labour MP Jessica Toale, inspired by her constituent Jan Hall's tale aired on ITV News, the event brought together mothers, daughters, and granddaughters from across the UK. Jan, 75, from Bournemouth West, lost her mother Rita to breast cancer at 32 in 1951, attributing it to DES use during pregnancies. MP Toale calls DES 'arguably the greatest pharmaceutical debacle in British history,' noting diverse demands—from apologies to financial aid. But the overriding plea is for NHS recognition: there's no dedicated page on the NHS site explaining DES.
Fellow Labour MP Sharon Hodgson, an advocate for victims of similar scandals like vaginal mesh and valproate, stresses the urgent need for medical education on DES. 'GPs often haven't heard of it and resort to searching online for info from sources like ITV News,' she reveals. 'This recurring pattern in healthcare disasters highlights a failure in professional training—patients shouldn't have to teach their doctors.' Alongside an inquiry, advocates demand awareness drives, ongoing research into DES's multi-generational effects, enhanced cancer and fertility screenings, and a compensation scheme.
Adding fuel to the fire, ITV's probe revealed the Medicines and Healthcare products Regulatory Agency (MHRA) misled the public for up to 25 years about DES's withdrawal timeline, issuing a recent apology. They falsely stated doctors ceased prescribing it for pre-menopausal women in 1973, but the truth emerged in September 2025: it lingered in pregnancy use until the 1980s, over a decade after known cancer risks. This revelation sparks outrage— was this intentional deception or negligent oversight? And does it point to a broader cover-up in pharmaceutical regulation?
A Department of Health and Social Care spokesperson responds: 'The painful testimonies of DES-related harm, passed down through generations, show women feeling unheard and unsupported. The Secretary of State is deeply examining this historical issue and exploring further support. Consequently, he's directed NHS England to partner with cancer alliances to inform GPs of DES follow-up protocols, preventing missed screenings for those at risk.'
For more details on this pressing matter, explore these resources:
- Cancer.gov's fact sheet on Diethylstilbestrol (DES) Exposure and Cancer (https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/des-fact-sheet)
- Broudie Jackson Canter's campaign page for DES-affected individuals (https://www.jacksonlees.co.uk/DES-Justice-UK)
- NHS info on cervical cancer causes (https://www.nhs.uk/conditions/cervical-cancer/causes/) and breast cancer in women (https://www.nhs.uk/conditions/breast-cancer-in-women/)
- If immediate medical assistance is needed, reach out to your GP, use the 111 online service, or dial 999 in emergencies.
If you've been touched by DES or have a story to tell, contact us at socialaffairs@itv.com. For quick insights into major news, tune into our 'What You Need To Know' podcasts.
What do you think—should the government establish a compensation fund for DES victims, or is this an outdated issue? Could this scandal be part of a larger pattern of medical oversight, and what reforms would you propose? Do you agree that pharmaceutical regulators need stricter accountability? Share your views in the comments below and join the conversation!
