Primodos: The first step towards Justice

At HERC we publish blog articles covering a wide range of issues that broadly relate to harm, evidence, crime and justice. In keeping with the critical position of HERC, our aim is to highlight all sides of the debate and to facilitate a discussion so that all voices are heard on the issue.

In this article, Sharon Hartles reflects upon the significant impacts of avoidable harms that have been perpetuated for decades through a culture of denial and an absence of state and corporate pharmaceutical accountability. Sharon Hartles was awarded an MA in Crime and Justice (with distinction) from The Open University in December 2019 and is a member of HERC. 

Primodos was the most widely used hormone pregnancy test prescribed to women in the UK. During 1958 to 1970 Primodos was marketed as a hormone pregnancy test and for the treatment of secondary amenorrhea. However, this was changed to just the treatment of secondary amenorrhea from 1970 to 1978, at which stage Primodos was withdrawn from the UK market. When Primodos was placed on the UK market in 1958 there was no centralised structured pharmaceutical regulation. In other words, no licence was required, no specific safety test was needed and there was no general consumer protection legislation.

In 1978, the Association for Children Damaged by Hormone Pregnancy Tests, was set up in the UK to represent families who suffered congenital abnormalities, stillbirths and miscarriages, allegedly due to taking the oral hormone pregnancy test Primodos. Decades of fighting for justice to uncover the truth about the failures of past Government Health Regulatory Authorities led to a review being commissioned in February 2018, by Jeremy Hunt, the then, Secretary of State.

The announcement in the House of Commons was for a review into how the health system responds to reports about harmful side effects from medicines. This stemmed from patient-led activist campaigns on the use of: hormone pregnancy test Primodos, sodium valproate and surgical mesh. Jeremy Hunt stated “patients and their families have had to spend too much time and energy campaigning for answers in a way that has added insult to injury for many.”

Two and a half years after this review was commissioned, on Wednesday 8th July 2020, the Independent Medicines and Medical Devices Safety Review published the First Do No Harm Report. This Report, together with the additional supporting documents to accompany it including: Personal Testimonies, Oral Hearing Transcripts, Hormone Pregnancy Tests Supporting Information, Timeline Key Events, History of Regulation and the Press Conference Speech (by Baroness Julia Cumberledge, CBE, Chair of the Independent Medicines and Medical Devices Safety Review) evidence unequivocal systemic failures and a clear link between PRIMODOS and its tragic side-effects.

Source: https://news.sky.com/story/primodos-sky-news-exposes-pregnancy-drug-cover-up-10807338

Marie Lyon, Chair of the Association for Children Damaged by Hormone Pregnancy Tests and active campaigner for justice, since 1978, on reading the First Do No Harm Report, declared “I’ve tried to be very calm and I can’t. It’s the fact it’s been acknowledged. They’ve actually looked at the documentation honestly and openly and for me that is the biggest result for our families today. They will be absolutely overjoyed.”

The Independent Medicines and Medical Devices Safety Review has set out nine recommendations in their First Do No Harm Report. Recommendation 1: states ‘The Government should immediately issue a fulsome apology on behalf of the healthcare system to the families affected by Primodos, sodium valproate and pelvic mesh.’ On the 8th July (the date the report was published) Matt Hancock, Secretary of State for Health and Social Care apologised “on behalf of the NHS and the whole healthcare system” to those who have suffered and their families.

For decades, there have been numerous publications evidencing an association between hormone pregnancy tests and congenital malformations in babies. In 2018 and 2019, Oxford University published an analysis of data which found a clear association relating to Primodos and birth defects. Other supporting research which have found links between hormone pregnancy tests and birth defects includes:

However, there have also been opposing publications which have found no association and/or inconclusive results. In 2017, the Medicines and Healthcare products Regulatory Agency (MHRA) published their report on the use of hormone pregnancy tests and adverse effects related to pregnancy including possible birth defects. The MHRA is an independent Expert Working Group of the UK’s commission on Human Medicines, which was established, in October 2015, in order to conduct this review. The MHRA found there to be insufficient evidence to support an association. Other opposing research includes:

For Marie Lyon, Chair of the Association for Children Damaged by Hormone Pregnancy Tests “after viewing the oral evidence presented by members of the Expert Working Group who were responsible for the scientific publication in 2017, it seems I already have a perfect example of the denial and protection culture endemic in our regulators. Denial when problems occur and protection, not for the patient but for the manufacturer.”

In light of the decades of jostling to and fro of supporting and opposing evidence, it is clearer to understand why the findings of the Independent Medicines and Medical Devices Safety Review in the First Do No Harm Report, together with Matt Hancock’s prompt apology on behalf of the UK Government and acceptance may in the first instance offer some form of relief for the families of the Association for Children Damaged by Hormone Pregnancy Tests.

In the Press Conference Speech by Baroness Julia Cumberledge Chair of the Independent Medicines and Medical Devices Safety Review, she stated ‘In our view Primodos continued to be given as a pregnancy test for years longer than it should. In the face of growing concerns it should have ceased to be available from 1967.’ Yet Primodos remained on the UK market until 1978. This is a failure on behalf of the UK Government to protect its population from harm. Equally, a failure on behalf of the corporation Bayer (Schering). Primodos, was manufactured by Schering in Germany. In 2006 Schering was acquired by Bayer plc.

It is important to point out that Amenorone Forte a hormone pregnancy test prescribed by GPs, during this same time frame, acted in much the same way as Primodos and was manufactured by Roussel in France.  Roussel was acquired by Sanofi in 2004. For this reason families of the Association for Children Damaged by Hormone Pregnancy Tests hold both corporations accountable for the avoidable harm inflicted.

According to the Independent Medicines and Medical Devices Safety Review, History of Regulation, The Medicines Act 1968 received Royal Assent in October 1968, however the ‘transitional period’ meant this Act did not come into effect until 1st September 1971. During this time the Committee on Safety of Drugs was formed, yet it had no legal powers. With little irony, there was no formal regulator, it was part of a voluntary arrangement. There was no body to legally mandate the removal of a drug from the market and limited mechanisms to regulate drugs and restrict their use.

More systemic failures followed because the Committee on Safety of Medicines, (which replaced the Committee on Safety of Drugs, 1st September 1971) focused its gaze on formalising new medicines entering the UK market. Products, including Primodos, which had been on the market before the 1st September 1971 were automatically granted a Product Licences of Right (PLR).

Primodos was awarded a PLR yet its product which had been on the market since 1958, had never been required to submit evidence of quality, safety or efficacy. This oversight to ensure Primodos met the appropriate standards of safety, quality and performance in line with new rules was another missed opportunity to protect public health and safeguard the interests of patients and users.

The Independent Medicines and Medical Devices Safety Review Timeline has brought to light other damning evidence. On 22nd July 1969 Schering UK wrote to Schering Germany recommending the removal of the pregnancy testing indication. In a letter dated 17th February 1970 to Schering, Dr Ruttle a member of the Standing Committee on the Classification of Proprietary Preparations (known as the MacGregor Committee – 1965 and 1971) which provided guidance as to which preparations should be used on the NHS, stated ‘The Committee would be prepared to place the product in A.3 if the promotional indication as a “pregnancy test” were withdrawn and I would suggest that the most appropriate and, acceptable to the Committee, promotion be “symptomatic treatment of amenorrhea to produce withdrawal bleeding.”

On the 9th March 1970 Schering agreed ‘to the deletion of “pregnancy test” from the indications, and to the promotional statement “the symptomatic treatment of amenorrhea not due to pregnancy, by producing withdrawal bleeding”. Further correspondence in April 1970 acknowledged the suggestions from Schering (removing the pregnancy test indication and altering promotional statements) and confirmed that Primodos would be placed in category A.3 (prescription-only medicines).

Five years later, the Committee on Safety of Medicines (an independent advisory committee to the UK medicines licencing authority) published a letter in the British Medical Journal (BMJ) on 26th April 1975. In this letter the Committee on Safety of Medicines stated they agreed with an article published five months earlier in the BMJ entitled Synthetic Sex Hormones and Infants which advised ‘there is little justification for the continued use of withdrawal type pregnancy tests when alternative methods are available.’

On 5th June 1975, the Committee on Safety of Medicines sent an alert letter – to all doctors in the UK – entitled Hormonal Pregnancy Tests, in which they advised them of a possible association between hormonal pregnancy tests and an increased incidence of congenital abnormalities. The Committee on Safety of Medicines stated ‘In view of the possible hazard, doctors should not normally prescribe certain hormonal preparations for pregnancy tests’.

Spanning 1958 to 1978, Primodos was given to around 1.5million women in Britain. Primodos was a hormone pregnancy test prescribed to women to detect pregnancy. It consisted of two tablets which were to be taken on consecutive days. A negative pregnancy test would result in a withdrawal bleed (within three to ten days of consumption of the tablets). It is now known that Primodos prescribed to women to confirm their pregnancy, by today’s standards equates to 13 morning-after pills or 40 oral contraceptive pills. Moreover, the hormones contained in Primodos are now used in the morning-after contraception pill.

A statement taken from the Independent Medicines and Medical Devices Safety Review Personal Testimonies from the families of the Association for Children Damaged by Hormone Pregnancy Tests illustrate their distress – “We feel that we were used as collateral damage by the pharmaceutical company who were developing the contraceptive drug at the time.” The personal testimonies of Nicky Gibbins and Daniel Mason evidence how “The effect on our lives have, as you can imagine, been devastating.” The alleged impacts of PRIMODOS comprise:

  • all congenital malformations
  • more specific malformations:
    • cardiac malformations
    • musculoskeletal
    • neurological
    • neurogenetical malformations
  • birth defects
  • miscarriage
  • stillbirth

The First Do No Harm Report together with the supporting documents is significant because it evidences a clear link between Primodos and the terrible avoidable harms that have been perpetuated for decades through a culture of denial and the absence of state and corporate accountability.

Acknowledgement in the form of an apology on behalf of the Government was the first step towards justice. However, in a letter dated 13th December 2018, to the Independent Medicines and Medical Devices Safety Review, Bayer stated ‘there is nobody at Bayer plc who could usefully contribute anything on the subject matter of your inquiry’. Notwithstanding this response, it is now time to look to the future.

The Government (on behalf of the UK regulators) and corporations Bayer (Schering) and Sanofi (Roussel) should as recommended in the First Do No Harm Report, fund the costs of care for those affected by state and corporate harm. In addition to this, the families of the Association for Children Damaged by Hormone Pregnancy Tests using the Independent Medicines and Medical Devices Safety Review evidence should be able to successfully take legal action for the harms done to them by Bayer, Sanofi and the regulators.

In line with recommendation 9, of the First Do No Harm Report, the Government has a duty to set up a task force which must schedule a timeline for the implementation of the remainder of the recommendations. Such initiatives should endeavour to provide a safety net to ensure that a patient-led approach is centred at the heart of future health care provision.

Infectious criminalisation: new waves of ‘coronavirus’ criminalisation and zemiology

At HERC we publish blog articles covering a wide range of issues that broadly relate to harm, evidence, crime and justice. In keeping with the critical position of HERC, our aim is to highlight all sides of the debate and to facilitate a discussion so that all voices are heard on the issue.

In this article, Avi Boulki considers the ways in which social harms are proliferating during the Coronavirus pandemic. Avi Boukli is Senior Lecturer in Criminology at The Open University.

Spring has struck this year. Food is really expensive. Have you noticed?

Amidst the world-sweeping pandemic, some of us find solace in exercising at home, indulging in [fill in the blank with something you/I can still afford], reading and re-reading the news, zoom-drinking with loved ones. The world has changed. Susan Sontag wrote in 1973 “… a society becomes ‘modern’ when one of its chief activities is producing and consuming images…”. Then perhaps a society becomes “unmodern” when, amid lockdown, successions of joggers elbow you at the park, shouting goodbye to the recommended 2-meter distance and your spleen.

Writing in lockdown on criminalisation and zemiology is both a complex and a simple task. On the complex level, with the lens focused on the state-corporate management of the pandemic, this blog post traces some of the relations between criminalisation measures that emerged as a response to the coronavirus pandemic and zemiology. It starts by visiting some criminological insights in relation to crime and the pandemic, before it moves to offer some suggestions as to how zemiology could account for the social harms exacerbated and made visible by the pandemic. It is also simple. Zemiology still enables us to assess what is happening from a political, economic, physical, emotional, and cultural point of view. Amid rapid socio-political changes, zemiology retains its shape and hope.

But let’s trace Ariadne’s thread:

Criminology is fascinating. In his lucid podcast, Manuel Eisner, discusses crime in times of the 2020 coronavirus pandemic. He takes a criminological perspective to discuss the social, legal, and political dimensions of a “crisis” but also includes criminological theories that strive to explain the current crime declines and increases, the trends’ highs and lows. The pandemic has raised some crucial fluctuations in crime, Eisner argues. For instance, in NY burglaries seem to be declining, while car thefts are on the rise. Similarly, some variations in crime rates appear in London too: knife crime and burglaries have dropped in the weeks that followed the introduction of social distancing and subsequent lockdown state response to the pandemic. This has meant both a material effect but also a shift in public and media discourse.

But what are the effects of keeping the focus solely on crime and crime control? Firstly, the narrow gaze on crime and crime control, at best, pushes back the perpetuation of social harm on the list of priorities for investigation. At worst, it further silences social harm, supplemented by surreptitious zemia. Particularly, the measures to deal with the “pandemic crisis” are not applied to a pre-existing just and equal society, but spur an authoritarian controlled capitalism that protects corporate interests while “offloading the costs onto the rest of us” . Essentially, vulnerable highly indebted workers, with limited access to benefits and public services are further crushed in the mill of casualisation, while working rights are demolished and layoffs skyrocket, “without concern for due process and as remote working destroys all limits to the working week”. As a result, a wide variety of physical, financial/economic, emotional, psychological, and cultural harms proliferate.

A picture containing outdoor, rock, bird, rocky

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Image of underwater pebbles and seashells, IP: Avi Boukli

Secondly, a sole focus on crime and crime control threatens to conceal the harms perpetuated by criminalisation measures. In the UK, draconian countermeasures are both vague and sweeping simultaneously, allowing the police almost unlimited discretion in exercising ill-defined powers. While they are combined with ever more draconian “feel good” and stay at home “essentials” – foldable table tennis nets (no space-shaming involved), jigsaw puzzles, and flour – are now sold at eye-watering prices for the labour aristocracy, and the wider working class alike. These criminalisation measures did not come in time to curb the deaths inflicted by the pandemic but with a time delay, and with an unequal impact on those of us who live on the streets, in shared accommodation, limited spaces, total institutions, and those of us who have long-term health conditions, which are meant to be paused to avoid further strains on an already overstretched health service. Further, these criminalisation measures do not put pressure on big pharmaceutical companies to develop, let’s say, the fastest and most affordable vaccine against a highly contagious virus, but on individuals to accept responsibility for catching or spreading the virus. Again, structures disappear, and the individual is reborn, Matrix-esque, responsible (“an imminent threat”) and covered in gelatine sociability (subject to “restrictions or requirements”).

As a result of the above, the language of zemiology is helpful in reading critically the Health Protection (Coronavirus) Regulations 2020 and the Coronavirus Act 2020, and the collapse of public health into public order. In summary the Regulations make it illegal for: i) a wide range of shops and businesses to open or to sell food or drink for consumption in their premises (Regs 4, 5); ii) a person to leave their house without a reasonable excuse (unless they are homeless) (Reg 6); a person to take part in public gatherings of more than 2 people subject to exceptions (Reg 7).

However, the lack of clarity regarding what constitutes a “reasonable excuse” or a valid “exception” may actually leave room for the usual norms around disability, class, and gender to fill in the blanks left by this “crisis” law. For instance, would a victim of trafficking escaping captivity, have a reasonable excuse on the basis of Reg 6 (m.) and what burden of proof does this involve? And a bit further, who is excluded from business bailout plans? Sex workers? Who is excluded from the category “vulnerable persons”? People with mild chronic asthma who struggle to breathe in spring, people with chronic conditions such as Crohn’s, Colitis, Chronic Fatigue Syndrome, and high blood pressure or an undiagnosed condition at the time when the measures were imposed? Lastly, who is the exception and who is the rule: is homelessness an exception, or is it a sign of vulnerability, or is the “crisis” the Pool of Siloam for political purposes… And equally, who is included? Do the business bailout plans include highly profitable wealthy businesses with large cash reserves? Uneven impacts are not abstract ideas but material realities, made up of bodies like yours and mine. Pre-pandemic we didn’t live in an equal society and it is hard to see how the restrictions imposed are going to mend the harms of these inequalities by collapsing the maintenance of public health into that of public order. As for the cultural harms, there is a concern that a decline in (street) violence in the public sphere, may go hand in hand with a rise in domestic violence.  But, after having being circled by a group of fellow citizens to be coughed at, or experiencing the exacerbation of physical dominance in public spaces by certain bodies over others, I argue, women, LGBTQ people, and men locked in with their abusers experience not just the collapse of public services into public order but, most crucially, the collapse of the public sphere into the domestic sphere and vice versa. Public inequalities are now domestic ones. Drawing on a zemiological analysis seems vital at a time when governments exhorts us to “work together” and focus only on essentials. While reducing infections is clearly crucial, we must not forget to consider who is treated as collateral damage or in need of more repressive state intervention in the name of public health.

Coronavirus, the Johnson Government and the ‘Deference-to-Science’

At HERC we publish blog articles covering a wide range of issues that broadly relate to harm, evidence, crime and justice. In keeping with the critical position of HERC, our aim is to highlight all sides of the debate and to facilitate a discussion so that all voices are heard on the issue.

In this article, Steve Tombs considers the early approach taken by the UK Government to the unfolding Coronavirus crisis. Steve Tombs is Professor of Criminology at The Open University.

As I write, new developments unfold almost minute-by-minute regarding the all-encompassing coronavirus pandemic. There is no doubt that by the time you read this, any empirical reference points I might have included here will be out of date – there will be more diagnosed and suspected cases, more deaths, more volatile movements on the stock-markets and central bank efforts to control these, not to mention, across the globe, increasing closures, shutdowns and lockdown of communities, travel routes and mass gatherings amidst news reports of celebrities and leading politicians who have tested positive for the disease. This is so fast-moving that no snapshot analysis of the harms associated with Covid-19 can do justice to what is, in the experience of any of us reading this, an unprecedented global phenomenon.

What is of interest, however, and what may endure for those interested in Governmental responses to social harm is the early approach taken by the UK Government to the unfolding crisis. The latest, and highest formal point in this, came late on Thursday 12 March, when UK Prime Minister Boris Johnson followed up the third ‘COBRA’ meeting in a week with another sombre, set-piece press conference. It is to this and what it means for Governmental approaches to harm, evidence and regulation upon which I wish to focus here.

The “worst health crisis in a generation”

In the context of Government interventions in social life across the globe of a kind and on a scale never before seen, the response of the Johnson Government has been, by comparison, at best pedestrian, at worst non-existent. For a Government which only 48 hours ago announced what some had hailed as the most Keynesian budget in a generation, the approach to the pandemic has been distinctly laissez-faire.

Credit: Frederic Lewis / Archive Photos / Getty Images / Universal Images Group; source: Britannica Image Quest

The Johnson Government had spent the day trailing the ‘fact’ that the country had moved from a ‘contain’ to a ‘delay’ phase, the latter being one in which we as a population were being primed for significant disruption. Yet that ground-laying was surprisingly at odds with the concrete measures set out by Johnson. In fact, and in full, these were as follows:

“From tomorrow, if you have coronavirus symptoms, however mild – either a new continuous cough or a high temperature – then you should stay at home for at least 7 days to protect others and help slow the spread of the disease.

We advise all those over 70 and those with serious medical conditions against going on cruises and we advise against international school trips.”

And in his closing statement, the PM reiterated the message of the preceding weeks:

“it is still vital, perhaps more vital than ever – that we remember to wash our hands”.

Such a response seems entirely at odds with the way in which the PM had introduced the press conference, referring to the “worst health crisis in a generation” which had led him to warn: “I must level with you, level with the British public, many more families are going to lose loved ones before their time.”

The appearance of science?

How, then, to make sense of this?

Firstly, we must understand the framing of the approach, typified at the press conference but characteristic of the Government’s response to the emerging pandemic over weeks. In his speech and then in response to questions, Johnson continually deferred to ‘the science’ and ‘the scientists’.

This deference was achieved visually in his being flanked by the government’s Chief Medical Officer, Prof. Chris Whitty, and the government’s Chief Scientist, Sir Patrick Vallance – as had been the case with previous press conferences on the matter earlier in the week. Not just this, but in the brief series of questions that were allowed following the three set-piece speeches by Johnson, Vallance and Whitty, the visuals were also reinforced – or at least that was the attempt – by a frankly somewhat ludicrous ‘sombrero’ type graph. A diagram on a flipchart, this was claimed to represent what an epidemic looked like – a flat lead in with a significant spike which, if not ‘flattened’, it was warned, would  overwhelm the country’s ability to cope and lead to ever greater death and emmiseration.

There was no sense as to what data had been used to construct the ‘graph’. Indeed, although minutes before the press conference, figures of 596 diagnosed cases  and 10 fatalities as a result of the virus in the UK had been released, Vallance estimated at the conference that “between 5,000 and 10,000 people in the UK are thought to have the virus now”, albeit virtually all undiagnosed, and not to be diagnosed, as it was also announced that testing in the community for the virus would from that point be halted. All of which places a great deal of emphasis on the epidemiology and the ’modelling’ to which all three men constantly referred  – and led some to wonder, what is it about UK data, science, epidemiology and modelling which is virtually unique when compared to that of every other country which has dealt with or is dealing with the same disease?

The discourse of science?

Given these discrepancies, the role of ‘science’ in the Governments approach seems at least  questionable. But this science-basis was reinforced discursively, consistently and constantly framing the Government’s approach as a scientific not a political matter. This had been evident for weeks but was perfectly captured in the set piece speeches at the press conference, and then the questions that followed. Thus, in his opening speech there, Johnson stated variously:

  • “the Chief Scientific Adviser will set out the best information we have on that in a moment”
  • “the Chief Medical Officer will set out our lines of defence”
  • “we are not introducing this [school closures and banning large gatherings] yet for reasons Sir Patrick will explain”
  • “ .. the scientific advice ..”
  • “at all stages, we have been guided by the science, and we will do the right thing at the right time”
  • “the scientific advice [on closing schools now] is that this could do more harm than good at this time”
  • “ .. the best scientific advice ..”
  • “ .. we will continue to provide, as soon as we have it, as much clear scientific and medical information as we can ..”

So there is a key framing going on here – that the Government’s position is a-political, driven by, based on, and ‘all about’ the science. But this, of course, is to obscure some two centuries of anti-positivist social science which theorises and describes how science is always an effect of what questions are asked and what data is gathered to answer them,  always to be interpreted in highly value-laden ways, always and unavoidably infected by economic, political and social interests. It is, frankly, a ludicrous way to present ‘data’, not least by a Government in the midst of an unfolding crisis.

Nudges in the right direction?

Photo by Frederic Lewis/Archive Photos/Getty Images; source: Britannica Image Quest

As well as the attempt to root it in ‘science’,  we also have to view the Government’s approach to the virus in a second context, one entirely in keeping with the broader, longer term trajectory in government regulation in the UK. This stretches back at least four decades. It is a  trajectory towards less regulation, less law, less enforcement, less intervention in social life, at least where these might affect the dominant institutions of our society and how these operate – all of which is claimed, perversely, to produce better outcomes in terms of social protection.

Look again at the strictures set out by Johnson to ‘flatten the curve’ as we move into the ‘delay’ phase – to use the quickly commonplace, but quasi-scientific jargon: wash your hands, self-isolate for ‘at least’ 7 days, don’t go on international school trips and avoid cruises if you are over 70. These all responsibilise – they place the primary onus of protection on individuals themselves with what is often banal or imprecise advice. And advice is key: none of this overly prescriptive (no ‘you must’ or ‘must not’), certainly none of it involves regulation nor law, all of it is based upon attempts to nudge people into modifying their behaviour. And here we get to the heart of the ‘other’ aspect of the scientific approach informing the Government here, namely ‘behavioural science’’.

Following, and partly as a consequence of,  the emergence and consolidation of ‘Better Regulation’ (ie less regulation) at the heart of UK governments through the 1900s and 2000s, the idea of nudging people towards more ‘responsible’ behaviour became ever central to Government thinking about regulation. Nudging – as an element of what is known as ‘behavioural science’ – came to prominence with the work of Richard Thaler, the Chicago economist who was to win the Nobel Prize for economics in 2017, and the Harvard economist Cass Sunstein. The latter had worked in the White House Office of Information and Regulatory Affairs, and his view of state regulation is encapsulated in the title of a 2013 book, Simpler: The Future of Government, which has been characterised thus:

“New principles  … are  transforming government. Countless regulations are being streamlined or eliminated. Transparent review of which rules are working, and which aren’t, is becoming the norm. Citing numerous examples from his years in the first term of the Obama Administration, and projecting forward into a data-driven future, Simpler provides a new understanding of how government can work.”

The approach is one underpinned by an antipathy to state intervention and regulation, as typified in the UK in the work of the Nudge Unit’, established by Cameron in 2010 within the Cabinet Office.  Although now only partly overseen by the Cabinet Office, this has been “working closely with the Department of Health and Social Care in crafting the government response” to Coronavirus. It has been a key influence over  “when to move from ‘contain’ to ‘delay’ phasing. This is based on evidence about duration of compliance.” Public contributions to the issue in the past month have been the blogs How to stop touching our faces in the wake of the Coronavirus (5th March) and Covid-19: how do we encourage the right behaviours during an epidemic? (24th February). This general approach to ‘behavioural government’ – not least on how Government’s should frame messages to the population (hence the focus on scientificity, above) –  is spelt out in a 2019 report, Behavioural Government Using behavioural science to improve how governments make decisions. It will perhaps come as no surprise to learn that Dominic Cummings, the controversial Chief Adviser to the PM, is closely associated with what he refers to as the ‘behavioural and experimental economics’ initiative.

Afterword

The deference-to-science approach may be a genuinely held commitment by PM Johnson and his Government. Or, it may be an abrogation of political responsibility, with more than an element of political back-covering. It is certainly, compared to approaches to managing coronavirus taken in other countries across the world, including our closest neighbours and our major European comparators, very much a leap of faith. Is it really based upon the best science, epidemiological and behavioural? Or is it an attempt to delay immediate measures which appear on balance more likely to provide social protection but which at the same time may do two things very quickly: expose the frailties of chronically underfunded national health, public health and public services infrastructures, all subjected to severe austerity cuts for over a decade; and bring grinding to a halt business-as-usual, risking further devastating effects to a stock market which on the same day as Johnson’s press conference had experienced its largest single loss since so-called Black Monday in 1987.

Amidst all the uncertainties associated with coronavirus, there is perhaps only one thing we can be sure about in terms of the Government’s approach to its control: only the test of time will judge its efficacy; and we will be the Guinea pigs.

Grenfell: Mis-Trust, Contempt and the Ongoing Struggle to be Heard

Steve Tombs, The Open University

 

Almost a year on from the most devastating fire in the UK for a century, the Public Inquiry began, following advocacy by INQUEST and others, with “commemoration hearings” dedicated to the memories of the 72 victims who lost their lives. It was an unremittingly painful, yet wholly just and necessary, process.

So much more is to be said and learnt about the circumstances leading up to the fire. But one thing we already know – and a fact to which anyone remotely connected to Grenfell Tower can surely never be reconciled – is that this mass killing followed a conscious decision  by the richest council in England to save £293,000. This is surely the apogee in the contempt displayed by the Royal Borough of Kensington and Chelsea Council (RBKCC) and the Tenants Management Organisation Grenfell residents which had “endured … for years” – what local MP Emma Dent Coad described as “a real disdain for people lower down the social order” – and must generate an enduring sense of worthlessness that the residents in and around the area will never shake off.  But what is perhaps more surprising – and disgusting – is that this contempt has persisted in the aftermath of the fire, further generating what Majid Yar has labelled harms of misrecognition– in essence, disrespect. It is with this mis-trust and contempt that this short comment is concerned, as we approach the one year anniversary of the fire.

One aspect of this contempt was the apparent in the complete lack of effective immediate response or leadership in the aftermath of the disaster – what Theresa May was to refer to, one week after the fire, as the “”failure of the state, local and national, to help people when they needed it most”. This is the context of the observation that “absence of clear strategies breeds lack of trust in authority, loss of confidence and a fear of the future that, sadly, is often well founded.” These failures on the part of authority persisted and continue to this day – as documented, for example, in the Initial and then the Second Report of the Independent Grenfell Recovery Taskforce, which have documented the continuing failings of RKCBC and the “severe trust deficit” between it and the local community. Then, more recently, the charity Muslim Aid has documented the void left by local and central Government, one filled “particularly in the first few weeks” by the community itself and a vast array of local organisations.

The continuing contempt on the part of central and local Government has also been repeatedly evidenced in the series of lies, half-truths and broken promises made to the affected households in the aftermath of the fire.

 

Billboards

Image courtesy of  Justice4Grenfell at https://justice4grenfell.org/press-release/3-billboards-outside-grenfell-tower-london/

One area of mis-trust was the palpable failure to meet the commitment made by the Prime Minister in the immediate aftermath of the fire – namely that “every person made homeless would receive an offer of accommodation within three weeks”. In fact, this was subsequently “clarified” as meaning temporary accommodation. In November 2017, RBKCC “promised that every survivor would have the opportunity to move into a new home before Christmas”, while weeks later the Minister for Housing and Planning estimated it would take RBKCC “up to 12 months” to rehome families. Moreover, the promise of being offered like-for-like tenancies was repeatedly broken.  As the Chair of Grenfell United noted, “For the survivors and affected families it seems like one broken promise after another.” By late May 2018, almost one year after the fire, only a third of the 210 families who had lived in the tower were in new, permanent accommodation, with another 72 neither in permanent nor temporary, but emergency,  accommodation.

A further area of mis-trust was the shifting and uncertain nature of the ‘amnesty’ offered to undocumented residents – originally stated at one year, then extended for 3 further months, followed by a policy announcement that “survivors would be able to apply for further periods of limited leave to remain, building up to five years. They could then apply for permanent residency”. A less well-documented condition of the offer set a deadline of 31 January to apply for the amnesty.

A further focus of contempt is to be found in the struggles between survivors and residents on the one hand and central government on the other around the Inquiry. First, contrary to assurances from Government, local residents were not consulted before the appointment of Judge Sir Martin Moore-Bick to lead the Public Inquiry, in the light of which Justice4Grenfell concluded that this “further compounds the survivors and residents sense of distrust in the official response to this disaster” – and had they been consulted would likely have objected to the appointment. Following this was the protracted process in which the limited initial Terms of Reference of the Inquiry were challenged and then largely confirmed, itself followed by the Inquiry’s formal December 2017 opening, at which the lack of direct or indirect representation of residents was the key point of contention. Only on the virtual eve of its opening did Teresa May confirm that there would be a Phase 2 of the Inquiry what which two panel members would be appointed. Of this partial, last-minute concession, Deborah Coles of INQUEST stated, “at every stage, bereaved and traumatised families have had to fight to be at the centre of the inquiry”.

This sense of constantly being of constant struggle to be heard, of being treated without sensitivity, being at worst lied to or at best told half-truths, must surely exacerbate feelings of mistrust, of being treated as worthless, as contemptible – exactly the same characteristics which defined many of the ways in which residents felt they were treated prior to the fire (notably by the TMO and RKBCC), and, more, exactly the ways in which their concerns about safety in the tower were dismissed.

In short, the contempt displayed towards the residents before the fire was maintained and reproduced after the fire. It was popularly recognised as a cause of the fire per se. As one resident stated outside the tower as it continued to burn, “We’re dying in there because we don’t count”. The struggle of survivors of the fire, the bereaved, and the residents of the Lancaster West estate to count – to be heard – continues.

This blog was originally posted at BRAVE NEW EUROPE, https://braveneweurope.com/steve-tombs-grenfell-mis-trust-contempt-and-the-ongoing-struggle-to-be-heard on 12 June 2018

Grenfell: unfolding dimensions of harm

Steve Tombs, Professor of Criminology, The Open University

 

Exactly six months ago, a fire broke out in Grenfell Tower, a 24-storey tower block on the Lancaster West estate in North Kensington, west London. Grenfell was and is many things: a tragedy, an outrage, a testimony to the violence of austerity, the biggest fire in Britain for generations, and perhaps a crime of corporate manslaughter. But it is also the site of a whole series of harms, generated both by the fire and its aftermath – albeit some are much more immediately apparent than others.

Physical Harms

The most manifest harms associated with the fire are, of course, the immediate deaths which it caused – some 71, so it is officially claimed, although intense controversy about the actual numbers has raged. Moreover, a week after the fire, the clinical director of the major trauma centre at King’s College Hospital, said that : “Many of the people who have survived will go on to make a good recovery, but how many will have life-changing injuries remains to be seen. It may take weeks and months for some patients to recover physically.”

There are other possible physical health effects of the fire which are perhaps less identifiable. It is not fully known what airborne toxins might have been emitted as a result of the fire, and what long-term effects exposures to these might be felt by residents and those in the living in the vicinity. However, we do know that asbestos was present in the building, while hydrogen cyanide was emitted from the burning insulation.

In addition to causing death, injury and illness, various aspects of the aftermath of the fire are likely to have caused detrimental health effects. First, it is likely that anyone with existing problems of alcohol and/or drug dependency at the time of the fire would have experienced heightened dependency as a result of the trauma of the fire. Second, many illnesses associated with deprivation – the residents of Grenfell were amongst the 10% most deprived in England – such as diabetes, obesity, high blood pressure and cholesterol  are likely exacerbated by their having to live in hotel or B&B accommodation where control over diet is more difficult to exercise.

Psychological and Emotional Harms

Surviving the fire in Grenfell Tower is most obviously likely to have produced a whole gamut of searing psychological and emotional problems with which victims will live  for years to come. These are likely to be associated with grief at the loss of loved ones, loss, too, of possessions which cannot be replaced, of pets, the recall of the horrors of exiting the building (and of seeing others unable to do so), guilt at survival, as well as horrors and guilt for bystanders and members of the emergency. These have all variously been reported in the aftermath of the fire. None are surprising. None are easily imaginable. None are, one suspects, easily remediable, not least given the parlous state of socially provided mental health services in the UK. In this context, within a month or so of the fire, reports began to circulate about suicide attempts and other manifestations of long term mental health problems, including PTSD, stress, depression and anxiety.

Grenfell

Image courtesy of Gerry Popplestone (Creative Commons)

Financial and Economic Harms

There is no way of knowing what financial costs were, and continue to be, incurred by former residents of the Tower, as well as those living in the vicinity (but they would include extra travel costs to work or school, the costs of eating out, of time off to attend meetings, funerals, medical appointments, and so on).  Moreover these costs are dwarfed by those to local, regional and national economies which are likely to follow the fire. At the local level, the Council faces heavy financial costs following the fire. Costs to central Government will be significant.  The costs of the inquiry itself are likely to run into millions. None of this is to mention the fallout costs for other councils across the country. Numerous councils have tested cladding on high rise tower bloc and other public buildings, notably hospitals, and many are seeking central Government funding for major cladding-replacement programmes.

Thus, these economic effects of Grenfell Tower are not confined to residents, the local community or even the borough – there are ripple effects that are flowing and will continue to flow through communities across the UK. This in turn means that those who are most dependent upon central or local services and facilities – those with the least financial independence – will be hardest hit. The poor, the disabled and the sick, those on various forms of benefits, children in the mainstream school system, and, with no little irony, those in social housing or who lack access to adequate or any accommodation at all, all will be impacted upon. The least hardest-hit will be the most financially independent – the wealthiest.

Cultural and Relational Harms

A further, discrete category of harms I label here as cultural and relational. In terms of cultural harms, it is clear that in their physical relocation from the Tower and area – their  dispersal –  that many of both the routines and the networks which constitute social life – at school, the local shops, around the flats and so on – have been rent asunder.  They have lost their social networks and social supports when they need them most; dispersal does not just mean loss of community, it can mean isolation, desperation or, at best, a state of painful limbo.

More than this, there are relational harms that follow from mis-trust of central and local Government, each of which were absent in the immediate aftermath of the fire, and for which PM May apologised. In terms of central Government, the uncertain nature of the ‘amnesty’ offered to so-called ‘illegal immigrants’ (a harmful term in itself) was one such source of anxiety. Another was the palpable failure to meet the commitment made by the Prime Minister in the immediate aftermath of the fire – namely that “every person made homeless would receive an offer of accommodation within three weeks”. In fact, this was subsequently “clarified” as meaning temporary accommodation. Exactly six months after the fire, four of out five of the households requiring accommodation have not been permanently rehoused. Also, contrary to assurances from Government, local residents were not consulted before the appointment of Judge Sir Martin Moore-Bick to lead the Public Inquiry in the light of which Justice4Grenfell concluded that this “further compounds the survivors and residents sense of distrust in the official response to this disaster”.

In many senses, there has been a contempt displayed towards the residents after the fire – one which entirely reproduced the attitudes displayed towards local residents prior to it. In fact, some recognised this contempt as a cause of the fire per se: as one resident stated outside the tower as it continued to burn, “We’re dying in there because we don’t count.” As the Inquiry opens this week, the demands that the voices of the residents must be heard and must count seem ever more pressing in the light of the unfolding, complexly interacting and layered harms which many of them continue to endure.

Why are the harms caused by poverty so ignored?

Joanna Mack , The Open University

and Stewart Lansley, Bristol University

Over the last three decades, overall wealth in Britain has doubled, yet the number of people falling below the minimum standard of living set by society as a whole has risen alarmingly, from just over one in six in 1983 to nearly one in three today.

The view promoted by the coalition government ministers and much of the media is that rising poverty is largely self-inflicted and a matter of individual failure – ‘a lifestyle choice’ as ministers like to call it. This individualistic focus on the causes of poverty echoes a tendency within social sciences and criminology to focus more on ‘the abstracted rational actor, as the primary unit of harm analysis’ rather than the differential impacts on different social groups of wider social and economic changes. Furthermore, it enables a policy focus that sees the role of the state as limited to changing the behaviour and aspirations of those who ‘fail’ – often through punitive means, such as benefits sanctions – and providing some, limited, support to enable them to change their prospects. Thus the coalition government imposed a series of ongoing cuts in benefit levels, leading to rising numbers turning to charitable help for the most basic of needs.

In our new book, Breadline Britain – the rise of mass poverty, we chart the rise in poverty in Britain over the last three decades through four large scale surveys – the ‘Breadline Britain’ surveys of 1983 and 1990 and the subsequent ‘Poverty and Social Exclusion’ surveys of 1999 and 2012. These surveys measure poverty using the public’s views on what is an unacceptable standard in contemporary Britain. Respondents are asked which of a long list of items and social activities, from a basic diet and minimum housing decency to a number of personal and household goods and leisure and social activities, they consider to be essential for living in Britain today.

This method establishes a minimum standard based on what the majority of people think are the necessities of life, which everyone should be able to afford and no-one should have to do without. This is the nearest we have to a democratic definition of poverty. It’s a standard that has support from all groups in society, across different social classes, genders, ages and, significantly, political affiliations. These surveys conclusively show that the public take a clear relativist view of poverty.

In 2012, the proportion of people who could not afford (as opposed to did not want) a number of the most basic of the publicly-defined necessities was higher than in 1983. Around six percent of households lived in a damp home in 1983, dropping to just two percent in 1990. It now stands at ten percent. The percentage of people who cannot afford to heat their home adequately has trebled since the 1990s, rising from three to nine percent. Nearly one in five children – 2.5 million – live with damp, while over half a million children live in a home that is both damp and cold.

Having enough food is another core aspect of everyone’s conception of poverty. The Department of Health has defined food poverty as ‘the inability to afford, or to have access to, food to make up a healthy diet’. The proportion of households unable to afford two meals a day stood at three percent in 2012, back to the levels found thirty years earlier, having dropped to negligible levels in the intervening period.

There has also been an increase in the numbers struggling to maintain a diet of sufficient quality. Being able to afford fresh fruit and vegetables every day has been a consistent health message of recent years – yet the percentage of households where adults go without has risen from five percent in 1999 to seven percent in 2012. The proportion of households where the adult goes without ‘meat, fish or vegetarian equivalent every other day’ (a measure of adequate protein in the diet) is up – from two percent in 1999 to five percent in 2012. On the basis of the three adult food necessities (two meals; fruit and vegetables; and meat, fish or vegetarian equivalent), three and half million adults are not properly fed by the standards set by the public. In addition, half a million children are not adequately fed.

The negative impact of poverty on people’s lives is very well established. Children who live in damp and mouldy homes are up to three times more likely than those in dry homes to suffer from coughing, wheezing and respiratory illness. This has long term effects on people’s health and well-being beyond childhood. The number of ‘excess winter deaths’ – the additional numbers that occurred from December to March compared to the average for the rest of the year – is on the rise following a long-term decline since the 1960s.

Poor diet is a risk factor for the UK’s major killer diseases. In a review of the evidence, the Royal College of Physicians reports that it contributes to almost half of coronary heart disease and a third of cancers. For growing numbers, it leads to diabetes, for older people it increases the risk of fractures, and for pregnant mothers there is a greater chance of a baby of low-birth weight.

Figure 1: Material deprivation and other harms, UK 2012

Material deprivation and other harms, UK 2012The pressure on living standards is also having a much wider impact.  In 2012, under half of adults could afford all the necessities, fourteen percent lacked one, nine percent lacked two while thirty percent of adults were unable to afford three or more necessities. Moreover, the percentage of households that cannot afford each of the items and activities seen as necessities in 2012 and 1999 has, in nearly all cases, risen or stayed the same. For some, the increase has been large: those unable to afford to ‘replace or repair broken electrical goods’ up from twelve to twenty-six percent; and those unable to afford ‘appropriate clothes for a job interview’ – a particular problem for the young unemployed – up from four to eight percent. There was also a rise in the proportion of children missing out on a number of key necessities, in some cases more than doubling. In 1999, two percent of children couldn’t afford a school trip once a term; by 2012 it was eight percent.

Significantly, these material and social deprivations are associated with other disadvantages and harms. Figure 1 shows that looking across all the necessities, fifty-nine per cent of those who lack three or more necessities say their health is affected in some way (from ‘slightly’ to ‘a lot’) by their situation and seventy-three percent have at least one financial problem (that is, they are constantly struggling to keep up with their bills or have fallen behind, they have during the last year borrowed to meet day to day needs or have been in arrears on one or other of their household bills). In addition, half of those who lack three or more necessities suffer four or more of the standard twelve indicators of stress, anxiety and depression used in government surveys, a cut-off widely taken as an indicator of poor mental health. Those who lack control over their lives, and sense this lack of control, pay the cost in poor mental health.

Even those with moderate levels of material deprivation, those who lack one or two items, are more likely to face a range of other disadvantages. Thus, a fifth of those lacking one item and a fifth of those lacking two say their health is affected in some way, a quarter of those lacking one item and forty-one percent of those lacking two have one or more financial problems, and a quarter of those lacking one and nearly a third of those lacking two have poor mental health.

In sharp contrast, those lacking none of the necessities are much less likely to experience other disadvantages. There is a clear gap between the experience of the forty-seven percent of the population who have all the necessities and the fifty-three percent who lack at least one and especially those who lack three or more. Among this latter group a large majority face a range of other problems.

Using a cut-off point of those who cannot afford three or more necessities – a group whose deprivations are both overwhelmingly enforced (by lack of income) and whose lives are affected in deep and multiple ways – the level of deprivation poverty has been steadily rising over the last thirty years – up from fourteen percent in 1983 to thirty percent in 2012. While the poor today are in some respects better off than those in the early 1980s, in particular possessing a wider range of consumer goods, they are less a part of the society in which they live. It is this that impacts on people in such a harmful way. Not only are they more likely to suffer direct harms – such as illness – but they also suffer harm in terms of the denial of resources to – using Amartya Sen’s concept of capabilities – be able to live the life one values.

This sharp rise in poverty – and its related harms – cannot be explained by a sudden explosion of individual failings. In contrast, it is intimately connected to the rapid rise in inequality resulting from the great interlocking social and economic upheavals of the last thirty years, many of them politically driven. The rolling back of the welfare state, the deregulation of markets (in particular financial markets), and the impact of increasing unrestricted terms of trade through globalisation have come at an enormous cost for increasingly large numbers of people.

Today’s working generation faces a much more treacherous labour market, one that has brought greater joblessness, the spread of low pay and deepening insecurity at work. These problems have been compounded by other changes from the shrinking of housing opportunities, especially for the young, to a deliberate shift in the burden of economic and social risks from the state and employers to the individual. People have increasingly been left to cope by themselves at the very time when insecurity and uncertainty have been on the rise.

The widespread harms caused by poverty have been ignored – despite being well established – precisely because they stem from the very organisation of society. When that organisation is dependent on promoting the primacy of individual agency and responsibility – or, in current parlance, of personal choice – then the harms of poverty are all too easy to blame on the poor themselves. Recognising that poverty stems from the accumulated reductions in opportunities, pay and life chances that result from systematic barriers acting differentially on people – dependent on their social and economic context – poses a much more fundamental challenge. It requires different ways of thinking about, and greater levels of inquiry into, how society could be organised to produce lower levels of poverty. Crucially, it challenges the current, dominant, free market model of capitalism with it bias toward capital and widening inequality.