A DES-victim and hero celebrated

Alan Turing to be the face on the new £50 banknote

Homosexual acts were criminal offences in the United Kingdom in the 1950s and Alan Turing was charged with “gross indecency” under Section 11 of the Criminal Law Amendment Act 1885. Brought to trial on 31 March 1952, he was convicted and given a choice between imprisonment and probation. His probation would be conditional on his agreement to undergo hormonal physical changes designed to reduce libido. He accepted the option of injections of what was then called stilboestrol (also known as diethylstilbestrol or DES), a synthetic oestrogen; this feminization of his body was continued for the course of one year. The treatment rendered Turing impotent and caused breast tissue to form, fulfilling in the literal sense Turing’s prediction that “no doubt I shall emerge from it all a different man, but quite who I’ve not found out”.

Selected Press Releases

  • Alan Turing, World War II code-breaker castrated for being gay, is the face of Britain’s £50 note, CNN Business July 15, 2019 – Alan Turing belongs on the UK’s £50 note; now put Harriet Tubman on the $20 bill, CNN Opinion, July 16, 2019.
  • Alan Turing is crowned the most iconic figure of the 20th centurydailymail, 6 February 2019.
  • Pardon all of the estimated 49,000 men who, like Alan Turing, were convicted of consenting same-sex relations under the British “gross indecency” law (only repealed in 2003), and also all the other men convicted under other UK anti-gay lawschange.org, Feb 10, 2015.
  • The Castration of Alan Turing, Britain’s Code-Breaking WWII Herothedailybeast, 11.29.14.
  • Alan Turings name restored with film about his work, life and identity,
    oddonion, November 14, 2014.
  • Budget 2014: Alan Turing Institute to lead big data research,
    oddonion, March 19, 2014.
  • The Imitation Game, based on the real life story of Alan Turingdesdaughter, 2015/02/14.
  • Alan Turing granted Royal pardon by the Queentelegraph, 24 Dec 2013.
  • Grant a pardon to Alan Turinepetitions, Closing:23/11/2012.
  • Alan Turing: Inquest’s suicide verdict ‘not supportable’BBC Radio Science Unit, 26 June 2012.
  • ALAN TURING AND HIS MACHINES – FRESH INSIGHTS INTO THE ENIGMAindependent.co.uk, 14 June 2012.
  • How Alan Turing Finally Got a Posthumous Apologyradar, September 17, 2009.
  • PM apology after Turing petitionBBC News, 11 September 2009.
  • Gordon Brown: I’m proud to say sorry to a real war herotelegraph, 10 Sep 2009.
DES DIETHYLSTILBESTROL RESOURCES

Alan Turing to be the face on the new £50 banknote

Castrated with DES for being gay, Alan Turing will appear on the new £50 polymer note

15 July 2019 – Today, Bank of England Governor, Mark Carney, announced that Alan Turing will appear on the new £50 polymer note. Making the announcement at the Science and Industry Museum in Manchester, the Governor also revealed the imagery depicting Alan Turing and his work that will be used for the reverse of the note. The new polymer £50 note is expected to enter circulation by the end of 2021. BOE news release.

“We want to represent as best as possible all aspects of diversity within the country, from race, religion, creed, sexual orientation, disability and beyond. What we have today is a celebration of one of the greatest mathematicians and scientists in the United Kingdom and not just this country’s history but world history.”

“Turing was homosexual and was posthumously pardoned by the Queen, having been convicted of gross indecency for his relationship with a man. His legacy continues to have an impact on both science and society today.”

Turing was found guilty of gross indecency and had to decide between going to prison or undergoing chemical castration. He chose the latter, a horrifying treatment that involved (DES) hormonal injections.

“I hope it will serve as a stark and rightfully painful reminder of what we lost in Turing, and what we risk when we allow that kind of hateful ideology to win.”

“It is almost impossible to put into words the difference that Alan Turing made to society, but perhaps the most poignant example is that his work is estimated to have shortened the war by four years and saved up to 21 million lives. And yet the way he was treated afterwards remains a national embarrassment and an example of society at its absolute worst.”

Selected Press Releases

  • Alan Turing, World War II code-breaker castrated for being gay, is the face of Britain’s £50 note, CNN Business July 15, 2019 – Alan Turing belongs on the UK’s £50 note; now put Harriet Tubman on the $20 bill, CNN Opinion, July 16, 2019.
  • Alan Turing is crowned the most iconic figure of the 20th centurydailymail, 6 February 2019.
  • Pardon all of the estimated 49,000 men who, like Alan Turing, were convicted of consenting same-sex relations under the British “gross indecency” law (only repealed in 2003), and also all the other men convicted under other UK anti-gay lawschange.org, Feb 10, 2015.
  • The Castration of Alan Turing, Britain’s Code-Breaking WWII Herothedailybeast, 11.29.14.
  • Alan Turings name restored with film about his work, life and identity,
    oddonion, November 14, 2014.
  • Budget 2014: Alan Turing Institute to lead big data research,
    oddonion, March 19, 2014.
  • The Imitation Game, based on the real life story of Alan Turingdesdaughter, 2015/02/14.
  • Alan Turing granted Royal pardon by the Queentelegraph, 24 Dec 2013.
  • Grant a pardon to Alan Turinepetitions, Closing:23/11/2012.
  • Alan Turing: Inquest’s suicide verdict ‘not supportable’BBC Radio Science Unit, 26 June 2012.
  • ALAN TURING AND HIS MACHINES – FRESH INSIGHTS INTO THE ENIGMAindependent.co.uk, 14 June 2012.
  • How Alan Turing Finally Got a Posthumous Apologyradar, September 17, 2009.
  • PM apology after Turing petitionBBC News, 11 September 2009.
  • Gordon Brown: I’m proud to say sorry to a real war herotelegraph, 10 Sep 2009.
DES DIETHYLSTILBESTROL RESOURCES

Chemicals, pesticides, microplastics added to supermarket food

The Honest Supermarket – What’s Really in Our Food ?

Can we trust our supermarkets to tell us the truth about what we are buying and how it was produced ?

For every pound we spend on food shopping, 77p goes to the supermarkets, giving them a huge influence over what we eat. Do their profits come first ?

In an experiment to discover the hidden truths about our everyday foods, Horizon has built the first ever truly ‘honest supermarket’. Drawing on the latest scientific research and leading experts from across the UK, the team have built a supermarket where the products are labelled with the real story of how they are produced and their effect on us and the environment. We invite the British public to come in and discover the truth about their favourite foods. And in our on-site lab, new scientific discoveries reveal the food facts the supermarkets aren’t telling you.

Presented by Dr Hannah Fry and dietician Priya Tew, The Honest Supermarket takes a cold hard look at what’s really going on with the food we eat. From new research that reveals you’re likely to be ingesting plastic particles along with your bottled water to the lab tests that uncover the disturbing truth about just how old your ‘fresh’ supermarket fish really is…

You’ll never look at the food on your supermarket shelves in the same way again says BBC2 Horizon, Jul 2019.

The NHS Patient Safety Strategy

Safer culture, safer systems, safer patients – July 2019

Summary

Patient safety has made great progress since the publication of To err is human 20 years ago but there is much more to do. The NHS does not yet know enough about how the interplay of normal human behaviour and systems determines patient safety. The mistaken belief persists that patient safety is about individual effort. People too often fear blame and close ranks, losing sight of the need to improve. More can be done to share safety insight and empower people–patients and staff –with the skills, confidence and mechanisms to improve safety. Getting this right could save almost 1,000 extra lives and £100 million in care costs each year from 2023/24. The potential exists to reduce claims provision by around £750 million per year by 2025.

Addressing these challenges will enable the NHS to achieve its safety vision; to continuously improve patient safety.To do this the NHS will build on two foundations: a patient safety culture and a patient safety system. Three strategic aims will support the development of both:

  • improving understanding of safety by drawing intelligence from multiple sources of patient safety information (Insight)
  • equipping patients, staff and partners with the skills and opportunities to improve patient safety throughout the whole system (Involvement)
  • designing and supporting programmes that deliver effective and sustainable change in the most important areas (Improvement).

The actions we –the NHS– will take under each of these aims are set out below.

Insight

The NHS will:

  • adopt and promote key safety measurement principles and use culture metrics to better understand how safe care is
  • use new digital technologies to support learning from what does and does not go well, by replacing the National Reporting and Learning System with a new safety learning system
  • introduce the Patient Safety Incident Response Framework to improve the response to and investigation of incidents
  • implement a new medical examiner system to scrutinise deaths
  • improve the response to new and emerging risks, supported by the new National Patient Safety Alerts Committee
  • share insight from litigation to prevent harm.

Involvement

The NHS will:

  • establish principles and expectations for the involvement of patients, families, carers and other lay people in providing safer care
  • create the first system-wide and consistent patient safety syllabus, training and education framework for the NHS
  • establish patient safety specialists to lead safety improvement across the system
  • ensure people are equipped to learn from what goes well as well as to respond appropriately to things going wrong
  • ensure the whole healthcare system is involved in the safety agenda.

Improvement

The NHS will:

  • deliver the National Patient Safety Improvement Programme, building on the existing focus on preventing avoidable deterioration and adopting and spreading safety interventions
  • deliver the Maternity and Neonatal Safety Improvement Programme to support reduction in stillbirth, neonatal and maternal death and neonatal asphyxial brain injury by 50% by 2025
  • develop the Medicines Safety Improvement Programme to increase the safety of those areas of medication use currently considered highest risk
  • deliver a Mental Health Safety Improvement Programme to tackle priority areas,including restrictive practice and sexual safety
  • work with partners across the NHS to support safety improvement in priority areas such as the safety of older people, the safety of those with learning disabilities and the continuing threat of antimicrobial resistance•work to ensure research and innovation support safety improvement.

Download/Read the full publication – The_NHS_Patient_Safety_Strategy_.pdf – on improvement.nhs.uk.

The James Lind Library’s Introduction to Fair Tests of Treatments

JLL Book of Essays, About Fair Tests, May 2019

Introduction

At various times in our lives and to varying levels of intensity, we all use, provide or pay for health and social care. As we decide what to do, take, offer or buy, we need evidence that is reliable, robust and trustworthy about different options. Even before James Lind’s experiment comparing possible treatments for scurvy on HMS Salisbury people had recognised that getting this evidence requires strenuous efforts to reduce bias –but that achieving this is often not straightforward. This book of essays from the James Lind Library is our attempt to illustrate some of the challenges encountered and how to overcome them.

We will take you on a journey through the sometimes stormy waters of why treatments need to be tested, rather than being based on assumptions that “it must work” before the treatment has even been tried, or based on impressions after it has been used a few times, through to the need for fair tests comparing alternative treatment options. We will show why genuine uncertainties must be identified and addressed, and how research to find the most effective and appropriate treatments need to build on research to identify the most effective and appropriate methods for doing that research. We will navigate through the reasons why comparisons need to be fair at the outset, and then kept fair as the treatments being tested are given;outcomes are measured;and results are analysed, reported, and combined in systematic reviews of all the relevant, trustworthy evidence.

We have not cluttered the chapters with references to all the source material on which we have drawn. For that level of detail, please follow the links to the fuller essays on the James Lind Library website. Instead, where we know of reviews of methodology research which are relevant to a topic, we have listed these at the end of each chapter.

By the end of the book, we hope that you will recognise how, to bring benefits of research to patients and the public, systematic reviews of fair tests are needed to provide key elements of the knowledge needed to inform decisions about health and social care, while taking into account other important factors, such as values, preferences, needs, resources and priorities. We also hope that, as you finish the book, you will share the sense of enlightenment, education and enjoyment that we have gained from preparing it.

Finally, we dedicate this book to England’s National Institute for Health Research. Without the Institute’s 16-year-long support for the James Lind Initiative, the home of the James Lind Library during that time, neither the Library nor these essays would have been possible. And we also wish to acknowledge the role the Institute plays in recognising the vital contribution of research to the delivery of health and social care that is effective and efficient, and the Institute’s leadership in ensuring that the research itself is effective, efficient and reliable, with minimal waste.

Abstract

1.3 Why treatment comparisons must be fair

Untrustworthy treatment comparisons are those in which biases, or the play of chance, or both result in misleading estimates of the effects of treatments. Fair treatment comparisons avoid biases and reduce the effects of the play of chance.

It is not only failure to test theories about treatments in practice that has caused preventable tragedies. They have also occurred because the tests used to assess the effects of treatments have been unreliable and misleading. In the 1950s, theory and poorly controlled tests yielded unreliable evidence suggesting that diethylstilboestrol (DES) helped pregnant women who had previously had miscarriages and stillbirths. Although fair tests suggested that DES was useless, theory and unreliable evidence, together with aggressive marketing, led to DES being prescribed to millions of pregnant women over the next few decades. The consequences were disastrous for the women and their children, who experienced infertility and cancers as a result. The lesson is that a treatment that has not been reliably shown to be useful should not be promoted.

Problems resulting from inadequate tests of treatments continue to occur. Again, because of unreliable evidence and aggressive marketing, millions of women were persuaded to use hormone replacement therapy (HRT). It was claimed that, not only could it reduce unpleasant menopausal symptoms, but also the chances of having heart attacks and strokes. When these claims were assessed in fair tests, the results showed that in women over 60, far from reducing the risks of heart attacks and strokes, HRT increases the risks of these life-threatening conditions, as well as having other undesirable effects.These examples of the need for fair tests of treatments are a few of many that illustrate how treatments can do more harm than good. Improved general knowledge about fair tests of treatments is needed so that –laced with a healthy dose of scepticism –we can all assess claims about the effects of treatments more critically. That way, we will all become more able to judge which treatments are likely to do more good than harm.

DES DiEthylStilbestrol Resources

The Primodos Issue ; debated by Lord Alton of Liverpool

UK Parliament, House of Lords Hansard, 28 February 2019

“They have faced the implacable determination of regulatory bodies spending huge amounts of public money on ad hoc scientific reviews to cast doubt on the work of highly reputable scientists. Those who have suffered so grievously deserve much better than this.”

Safety of Medicines and Medical Devices, House of Lords Hansard Debate, 28 February 2019.

More information

Primodos, Sodium Valproate, Surgical Mesh : Baroness Cumberlege Talks

UK Parliament, House of Lords Hansard, 28 February 2019

“For the families involved, it is life-changing and extremely distressing. For those women who took Primodos and sodium valproate, there is an intense feeling of guilt. They took the medication and they blame themselves. However hard one tries to persuade them that it was not their fault, the guilt remains.”

“That tells me something is seriously wrong; the system is not working as it should. People who have been harmed should not have to fight to be heard or to access the care they need.”

More information

Lords debate Safety of Medicines and Medical Devices

UK Parliament, House of Lords Hansard, 28 February 2019

Lords debates medicinal safety in ref to the public health scandals involving the hormone-based pregnancy test drug Primodos, the use of vaginal mesh implants and the anti-epilepsy drug sodium valproate.

  • Interventions from Lord O’Shaughnessy, Lord Hunt of Kings Heath, Baroness Walmsley, Baroness Masham of Ilton, Baroness Cumberlege 36:28 , Lord Brennan, Lord Carrington, Lord Bethell, Baroness Bryan of Partick, Lord Alton of Liverpool 1:17:29 , Lord Suri, Baroness Finlay of Llandaff, The Earl of Dundee, Baroness Jolly, Baroness Thornton, The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Blackwood of North Oxford).
  • Read the Lords Hansard transcript.
  • Parliamentary news, research briefing.
  • Parliament news, press release.
  • Video source, Parliament Tv.

More information

EWG Primodos review criticised for ‘not assessing risks properly’

Sky News’ Exclusive, 4 Apr 2019

“Somebody, somewhere, has performed a meta-analysis.
At some point, there was a decision not to include that in the EWG report.”

Oxford University professor Carl Heneghan has told Sky News the evidence against the pregnancy drug Primodos suggests a significant link between it and birth deformities (see below).

On 23 April 2019, during the Westminster Hall debate on the Expert Working Group report on hormone pregnancy tests, some MPs also questioned the methodology used and asked why not use meta-analysis to assess primodos evidence ? Some others clarified the difference between correlation vs causation (in ref to primodos link to births defects), or said : with pharma funding the MHRA, can the EWG report be fully independent ?

More information

  • 2018 Studies :
    • Oral hormone pregnancy tests and the risks of congenital malformations: a systematic review and meta-analysis, F1000Research, 31 Oct 2018, 7:1725, DOI:10.12688/f1000research.16758.1.
    • The Primodos components Norethisterone acetate and Ethinyl estradiol induce developmental abnormalities in zebrafsh embryos, Nature, 13 Feb 2018, DOI:10.1038/s41598-018-21318-9.
  • Westminster Hall debate pack : CDP-2019/0095, 18 April 2019.

With Pharma funding the MHRA, can the EWG Report be Fully Independent ?

Westminster Hall debate, 23 April 2019

” Yes we had a (Primodos) review, but I’m not sure we can call that ‘independant’ “

Yasmin Qureshi MP calls into question the independence of the MHRA in its central role on the expert working group (EWG), for their report on the use of hormone pregnancy tests (HPTs) and adverse effects relating to pregnancy including possible birth defects.

Westminster Hall debate, 23 April 2019. Video reference.

More information