Sodium Valproate: The Fetal Valproate Syndrome Tragedy

Sharon Hartles, Member of the Harm and Evidence Research Collaborative,
The Open University

In the UK, Epilim is the dominant sodium valproate medication used to treat patients at risk of epilepsy associated convulsions. Epilim is an effective anti-convulsant medicine (epilepsy drug) and for this reason it has been licensed for usage since 1973. However, Epilim is also a teratogen; thus exposure to this drug causes an increased risk of physical, developmental and neurological harms in the human embryo or fetus.

Sodium valproate, marketed as Epilim in the UK, has been linked to physical, developmental and neurological harms in the human fetus. ALAMY https://www.thetimes.co.uk/article/sinn-f-in-senator-urges-inquiry-for-epilim-babies-hr6vlklmf

Given the fact that sodium valproate is harmful, wherever possible it clearly should not be prescribed to female patients of childbearing age.  Despite this, the regulators and Sanofi, the company responsible for manufacturing and marketing Epilim (Sanofi acquired the company from Reckitt-Labaz in or around 1980) chose to keep patients in the dark for decades and did not disclose the known associations. As a consequence, patients were unable to make informed choices, which has resulted in the preventable fetal valproate syndrome tragedy.

According to The independent Medicines and Medical Devices Safety Review, congenital birth defects associated with in utero exposure to sodium valproate include:

  • Neural tube defects (NTDs), such as spina bifida 
  • Cleft lip and palate
  • Facial and skull malformations
  • Heart, kidney, urinary tract and sexual organ malformations
  • Limb defects
  • Developmental delay
  • Autism Spectrum Disorders (ASDs)
  • Attention Deficit Hyperactivity Disorder
  • Ear malformations and auditory processing
  • Skeletal malformation
  • Arthritis in older children
  • Effects on the endocrine system
  • Sexual identity problems (which occur due to a mismatch between genital development and neural / sexual identity development).
  • Psychomotor issues.
  • Withdrawal symptoms – associated with prenatal sodium valproate exposure.

Fetal valproate syndrome harms are widely accepted within the clinical and regulatory community, including by: the National Institute for Health and Clinical Excellence (NICE), the Medicines and Healthcare products Regulatory Agency (MHRA) and the European Medicines Agency (EMA).

During the 1960s and 1970s, articles were published drawing attention to the concerns about the teratogenicity and anti-epileptic (anti-convulsant) medication this included research by: Lawrence, 1963, Janz and Fuchs 1964, Meadow 1968, Speidel and Meadow 1972,  Lowe, 1973, Fedrick 1973, Hill 1974, Barr, 1974 and Hanson and Smith 1975. Yet, despite the known harms, documents uncovered from The National Archives revealed that in 1973, the Committee on Safety of Medicines (a precursor to the  Medicines & Healthcare products Regulatory Agency) thought it best not to make patients aware of the dangers because “it could give rise to fruitless anxiety”. 

The controversy surrounding the abhorrent failure to communicate the preventable risks to clinicians and patients was evidenced again because by the early 1980s the regulator and manufacturer was in possession of sufficient information to conclude that Epilim increased the risk of congenital abnormalities. Even though the links between the exposure to sodium valproate and the increased risk of harms to a fetus were well-documented, patients were not informed directly of the link until 2005. In some cases care pathways for women of child-bearing age were not established until 2016. In February 2018, the European Medicines Agency put in measures to avoid valproate exposure in pregnancy.

A visual warning of the pregnancy risks (in the form of text) with other warning symbol on the outer carton. https://www.chemistanddruggist.co.uk/cpd-article/valproate-pregnancy-prevention-programme

The fetal valproate syndrome tragedy (medical negligence) was entirely avoidable, resulting from a regulation failure and decades of inaction by successive governments to safeguard patients. The true number of individuals’ harmed by sodium valproate in utero since it was licensed in 1973 in the UK is unknown, however, the consensus estimate is around 20,000.  More recent evidence suggests that the medical problems associated with fetal valproate syndrome may be passed down the generations.

Those affected by fetal valproate syndrome have paid the highest price for the regulator and the manufacturer’s negligence and will continue to do so. In the words of a member of the Organisation for Anti-Convulsant Syndrome (OACS Charity):

‘I am mourning my child now and will be mourning the death of

her when she’s gone, this is the result of Valproate, no parent

wants to see their child slowly die in front of them’.

The role that the regulator and the manufacturer Sanofi have played in creating and perpetuating this tragedy is evident, therefore financial redress should be paid to all those affected by fetal valproate syndrome.

Currently, 27,000 women of child bearing age are taking valproate in the UK. On 2nd March 2021, in the House of Lords, James O’Shaughnessy, Vice-chair for the All-Party Parliamentary Group for First Do No Harm, reported that since June 2020, 150 babies had been born suffering harms due to sodium valproate exposure. Therefore it is imperative that the Government find ways to minimise the risk of harms to future babies. Beyond this, lessons must be learned and mechanisms put into place to ensure avoidable systemic failures on this scale do not happen again. 

There are a number of places throughout the UK and globally which offer general advice and support to individuals and family members affected by fetal valproate syndrome harms. These include: 

Bipolar, UK

Epilepsy, UK

Epilepsy Society, UK

FACSAWARE.NET, UK

FACS – Fetal Anti-Convulsant Syndrome Association, UK

In-FACT – Independent Fetal Anti-Convulsant Trust, UK

OACS – Organisation for Anti-Convulsant Syndromes, UK

Epilepsy, Ireland

FACS Forum, Epilepsy, Ireland

OACS Organisation Anti-Convulsant Syndrome, Ireland

Epilepsy, Scotland

APESAC – Association of Parents of Children with the Syndrome Anti-Convulsant, France

ABVSV/BVSVS – Belgian Association of Victims of Valproate Syndrome, Belgium

IBE – International Bureau for Epilepsy

This blog was originally published by the Harm and Evidence Research Collaborative at The Open University. See: https://www.open.ac.uk/researchcentres/herc/blog/sodium-valproate-fetal-valproate-syndrome-tragedy

Policing, Violence and State ‘Truths’

Joe Sim, Professor of Criminology, Liverpool John Moores University,; Steve Tombs, Professor of Criminology, The Open University

For us, the recent demonstrations in Bristol raise at least two important issues about violence and ‘safety’ in the UK as we write.

First, the Police, Crime, Sentencing and Courts Bill marks a further intensification and escalation in the state’s authoritarian, paramilitarised response to maintaining public order. This has been a constant focus of political and popular debate for decades, resulting in a layer of oppressive and restrictive legislation and the uncritical valorisation of the world of public order.

In contrast, the often-brutal maintenance of private order in the home through the fear and use of male violence still remains shrouded in political silence, and systemic indifference, despite the rhetoric of successive governments that the state is taking it seriously. The UK Femicide Survey, covering the years 2009-2018, paints a damning picture of the still-neglected violence happening daily in the world of the private which has not generated the same popular and political response:

By far the most common relationship consistently over the ten years between the perpetrator and the victim was that of current or ex-spouse or intimate partner being 888 of 1,425 cases (62%). The next most common relationship between victim and perpetrator was familial (10%) with 111 women being killed by their sons and a further 32 women killed by another male relative. Only 8% of cases involved total strangers

It is also worth noting that the state’s concern with safety and order in the world of the public only extends so far. Safety can also be compromised by hate crimes, which, like violence in the world of the private, still receives scant political and popular attention. In 2019/20, there were 105,090 hate crimes recorded by the police in England and Wales excluding Greater Manchester. This represented an increase of eight per cent compared with the previous year. The majority of these crimes were ‘race hate crimes, accounting for around three-quarters of offences (72%; 76,070 offences).’

State ‘Truths’

The second issue raised by the state’s response to the demonstrations was the  relentless and insidious attempt to construct a ‘truth’ about the nature and extent of the violence experienced by its agents, through a toxic combination of exaggerating and overdramatising the violence committed by the protestors and the seriousness of the injuries sustained by police on the ground. Exaggerating and over-dramatising injuries sustained by state agents has been central to the state’s ideological armoury for decades. The state’s mendacity around who is to blame for public disorder, based on the pejorative construction of ‘negative reputations’, and  uncritically disseminated by the mass media, also has a long history as the reporting of the year-long miners strike in 1984/5, Stonehenge, Hillsborough and the death of Ian Tomlinson have demonstrated.

Both the major political parties in England and Wales have unequivocally supported this ‘truth’ about the dangers posed to its agents. And while the Bristol police had to retract their mendacious claim that a number of officers had been seriously injured during the protests, the ideological damage had been done.

Additionally, the violence committed by state agents is individualised. State violence is focussed on those agents who step outside the acceptable limits of state violence and coercion. This means that any critical consideration of the unfettered discretion, the authoritarian, occupational culture and the lack of democratic accountability that prevails within the police and prisons is effectively ignored in favour of a narrative based on a few ‘bad apples’ whose behaviour is dismissed as an aberration from an essentially benevolent state norm. This guarantees ongoing immunity and impunity for the broad mass of state agents in favour of the ‘deviant’, unacceptable individual.

Kingsnorth

One of the most outrageous examples of media manipulation occurred after demonstrations at Kingsnorth power station in 2008. As The Guardian revealed at the time, the police claimed that out of the 1500 officers policing the demonstration, 70 had been injured by demonstrators. In fact, there were 12 reportable injuries, only four of which were sustained through direct contact with protestors and they were at the lowest level of seriousness. Other injuries included ‘being “stung on finger by a possible wasp”, “officer injured sitting in car” and “officer succumbed to sun and heat”; one officer cut his arm on a fence when climbing over it, another cut his finger while mending a car, and one “used leg to open door and next day had pain in lower back”. A separate breakdown of the 33 patients treated by the police tactical medicine unit showed that three officers had succumbed to heat exhaustion, three had toothache, six were bitten by insects, and others had diarrhoea, had cut their finger or had headaches’.  

The claim that protestors come to demonstrations ‘tooled up’ with dangerous weapons – a familiar state and media stereotype – was also not in evidence at Kingsnorth. The ‘dangerous’ items confiscated from the protestors included: toilet rolls, board games, clown costumes, glue, marker pens, cushions, carpet, wood, paint, scissors and bicycle locks  as well as ‘anything that could have been used to set up camp, including spades and duct tape, generators and hammers and nails’. This information was only revealed after a Freedom of Information (FOI) request.

Christine Berry, who was involved in exposing the state’s mendacity, has pointed out that[i]:

A strikingly similar playbook was used in Bristol last month, where police claimed to have suffered a punctured lung and broken bones. They later admitted these claims were baseless, but by then the damage was done: swathes of media reports had successfully implanted the idea that the protesters were violent, and anyone defending them was subjected to social media pile-ons.


Finally, the hugely controversial report by the Commission on Race and Ethnic Disparities, published on March 31 continued the state-defined trend. It contained data which reinforced the narrative about the dangers police officers faced. The chapter on Crime and Policing, which at over 60 pages was the longest in the report, compared with chapters on Education and Training (50 pages), Employment, Fairness at Work and Enterprise (30 pages) and Health (34 pages), finished with a section on ‘the risks of doing the job’. Not unsurprisingly, the Commission, citing data from the Police Federation, argued that, in 2017, a police officer ‘was assaulted every four minutes’. Five other sources, over and above the source from the Federation, were cited as evidence regarding the risks police officers faced: two from the Home Office, two from the Daily Telegraph and one from the BBC.

Conclusion

In 2005, Leo Panitch and Colin Leys pointed to the ‘unprecedented levels of secrecy, obfuscation, dissembling and outright lying that now characterize public life…a generalized pathology of chronic mendacity [which] seems to be a structural condition of global capitalism at the beginning of the 21st century…’.

Sixteen years on, the state’s elasticated relationship with the truth has arguably become even more problematic, a point poignantly and powerfully illustrated by the pandemic, particularly around the number of dead, and, crucially, how they died.  For example, the government has consistently denied that there was rationing of intensive care for the elderly. And yet, there is evidence to suggest that rationing of life-saving care was ‘widespread’ in hospitals. Thus:

just one in six Covid-19 patients who lost their lives in hospital during the first wave had been given intensive care treatment. This suggest that of the 47,000 people who died of the virus inside and outside of hospitals, an estimated 5000 –  just one in nine –  received the highest critical care, despite the government claiming that intensive care capacity was never breached.

One doctor commented on how the government’s narrative was facilitated by daily press briefings where:

…you just couldn’t recognize anything that they were saying. It was so discordant with what we were seeing. They’d made it all up. It was completely bizarre – picking certain statistics to highlight how well they were doing versus other countries when actually, particularly in London, it was an absolute car crash (ibid, emphasis added).

As we pointed out over a decade ago, claims about the on-the-job risks faced by police officers wholly obscure the fact that, compared to many occupations in the UK, the police experience remarkably low levels of occupational death and injury. In both absolute and relative terms, agriculture, construction, manufacturing, and transportation are by far the most dangerous occupations for fatal and major injuries, whilst police barely figure in the 13,000 or so deaths from occupational exposures recorded every year by the Health and Safety Executive. Therefore, while it should be recognized that some police officers are injured, die and fall ill as a result of work, empirically, compared with the dangers faced by other workers, police work is at the safer end of the occupational spectrum. If their work is to be made safer, and their victimization is to be reduced, then the complexity of the dangers they, and other occupational groups face, needs to be considered as a whole.

The simplistic claim that the issues referred to here are all effects of a ‘post-truth’ society obscures the fact that the UK state has always bent the truth in order to achieve its ends. In 2021, what is important is that the technology currently at the state’s disposal, the decline in investigative journalism, despite some honourable exceptions, and an acquiescent, mainstream media, has facilitated the speed and spread of official discourse which makes it difficult, though not impossible, for counter narratives to emerge. At the same time, the state’s ‘truth’ in this and other areas has not achieved hegemony. Contradictions, contingencies and spaces of contestation, generated by grass roots organizations and community based media alternatives ensure that the state’s definition of reality has not prevailed, at least not yet.

[i] Thanks to Paul Gilroy for pointing out this reference.

This blog has also been published by the Harm and Evidence Research Collaborative at The Open University. See http://www.open.ac.uk/researchcentres/herc/blog  

Mesh: Denial, half-truths and the harms

Sharon Hartles, Member of the Harm and Evidence Research Collaborative, The Open University

Mesh implants used ‘with no clinical evidence’ (Screenshot). Photo Credit: BBC Two Victoria Derbyshire 15th January 2020

Surgical meshes have been in use since the late 19th century. In the mid-20th century the clinical usage of mesh increased. Now, in the early 21st century, procedures involving mesh implantation are common surgeries that are performed around the world. Despite the frequency and worldwide usage of mesh medical devices, the debate about whether or not the benefits outweigh the alleged harms remains highly contested.

Mesh implants are manufactured from synthetic (non-absorbable or synthetic absorbable) and biological materials. Synthetic non-absorbable materials include: polypropylene, polyester, and polytetrafluorethylene. Synthetic absorbable materials include: polylactic-co-glycolic acid and polyhydroxybutyrate. Biological materials include: modified collagen of porcine or human dermal or visceral collagen.

Surgical (open) or laparoscopic (keyhole) approaches are carried out for the clinical applications of mesh implants. Mesh medical devices have been installed in breast reconstruction, abdominal/pelvic hernia repair, and hiatal hernia repair. Regardless of mesh implant technique and location, each material provides its own set of challenges.  As such a complex range of potentially harmful side effects can occur.

The recent publication of the Independent Medicines and Medical Devices Safety Review (IMMDSR) report, First Do No Harm and thesubsequent recommendations were welcomed by individuals and campaign groups effected by: mesh implants, Primodos and the anti-epilepsy drug sodium valproate. However, the mesh focus was centred on abdominal and vaginal pelvic mesh procedures used in the treatment of stress urinary incontinence and pelvic organ prolapse. For this reason the voices and lived experiences of many other mesh-harmed individuals, who did not fall into the particular focus, were not heard and did not form part of the IMMDSR publication.

Mesh-harmed individuals and campaigners experience traumatic, excruciating, unbearable pain and debilitating life changing harms, yet it is not only the medical devices that cause harm. Stubbornness and reluctance to blame implants in certain cases has led to doctors being accused of gaslighting – psychologically abusing mesh patients by questioning their sanity. This is exacerbated by flaws in the healthcare system, in some circumstances stemming from inexperience of professionals; gaps in research linking side effects to medical devices; and contested safety and efficiency status.

Dismissed as ‘women’s problems’, harms resulting from mesh implantations have been suppressed by doctors, leaving patients feeling belittled, ignored and above all disempowered. Relentless campaigning by patient groups has raised awareness of the lack of informed consent and a failure to listen to patients’ voices. In addition to this, campaigners have generated media and public interest into this injustice. This is not just localised to the UK, mesh surgeries are performed worldwide, and thus mesh-harmed activists are campaigning for justice around the world.

On 4th March 2021, in a landmark judgment, the Federal Court of Australia dismissed an appeal by Johnson & Johnson (one of the main manufacturers of vaginal mesh), who was found to have acted negligently. Johnson & Johnson concealed known complications about mesh implants and aggressively marketed their faulty implants successfully based on half-truths. A clear case of profit before harm, Johnson & Johnson had no regard for the serious and debilitating side effects thousands of women would experience from their mesh devices; and instead was driven by profiteering and commercial interests.

Although it is overwhelmingly women’s voices which have been ignored and women’s lived experiences which (until recently) have not been validated; it is paramount to note that mesh medical devices are also implanted into men, children and babies. Therefore it stands to reason that the devastating impacts of mesh are not just experienced by women. In December 2018, Graham Robertson, was left with a multitude of serious health complications, allegedly stemming from hernia surgery in 2007. While he experienced chronic pain, professional responses to his situation ranged from dismissal to denial. From the doctors’ perspectives the hernia had not returned, thus demonstrating the success of the procedure. Yet, despite the successful nature of the surgery, in this case, the side effects outweighed the benefits. 

The responses to many questions remain contested or disputed at this time, such as:

  • Do the long-term benefits of mesh medical devices outweigh the risks (side effects)?
  • How is reasonable assurance of safety and effectiveness of mesh medical devices measured? 
  • What practices are in place (locally and globally) to ensure patient voices are listened to and acted upon?
  • What systems are in place to deter companies from favouring profit and commercial gain above the interest of patient safety?

Nevertheless what is apparent is the need to ensure patients are able to make informed decisions about their healthcare and well-being. In order to do this patients must be fully informed about the risks. Beyond this, a patient-led approach must be centred at the heart of future health care procedures and provision. The hope is that such an approach will guarantee the focus remains on patient safety first; and deters other agendas which would potentially conflict with the best interests of patients.

There are a number of mesh campaign groups throughout the UK and globally which offer general advice and support to individuals affected by mesh harms. Groups include:

This blog was originally published by the Harm and Evidence Research Collaborative at The Open University. See http://www.open.ac.uk/researchcentres/herc/blog/mesh-denial-half-truths-and-harms

Reflections on COVID-19, Prisons and Legal Activism

Dr. David Scott, The Open University and Prof. Joe Sim, Liverpool John Moores University

In April 2020, we provided expert legal evidence to a court case involving a terminally ill prisoner. To the best of our knowledge this is the only legal case to date calling for the release of a dying prisoner in the context of the elevated risks to prisoner health through the spread of COVID-19 in prisons.

Prisons are crowded and unhygienic environments which historically have been hot-beds for the spread of contagious diseases, such as tuberculosis.  Many prisons are vermin infested and in a poor state of repair. They are often also draughty, something also significant given the recent evidence of how COVID-19 can spread through the air. A number of prison cells do not meet the basic international standards and minimum rules with regards to size or conditions and some prisons, such as HMP Coldingley and HMP Long Lartin, hold prisoners in cells with no integral sanitation.

Epidemiologists and other experts, including the government’s own advisors from Public Health England, have noted that unless there was a radical reduction in the prison population, which on 21st February 2020, stood at 83,695, then there could be a humanitarian catastrophe resulting in up to 3,000 prison deaths.  Whilst government initially seemed persuaded by these arguments, any possibility of a radical reduction in prison numbers disappeared off the political agenda almost as quickly as it had arrived.  By 12th February 2021, the prison population had declined by more than 5.000 during the pandemic to 78,188 and this small and almost certainly temporary reduction in numbers is now considered sufficient by a government clinging tightly to a ‘law and order’ ideology at whose centre stands the prison.

A Dual Strategy

Since March 2020, penal policy has followed a bifurcated strategy aimed at expanding the capacity of single-cell occupancy (by around 500 places) and containing the spread of the disease through cohorting, which brings together prisoners who actually had symptoms of COVID-19; shielding, which is very similar to the notion of isolation within the broader community; and maintaining social distancing through an authoritarian lockdown which has  dramatically curtailed the already limited prisoner interactions prisoners have with each other and the wider community. This strategy, which is dehumanising and hugely harmful to prisoners’ physical and mental health, has denied them visits with their family and left them isolated in prison cells for up to 22 and a half hours a day. In a thematic study published on 11th February 2021 exploring the impact of the pandemic on prisoners, the HMCIP found incontrovertible evidence that the ‘cumulative effect’ of the prison lockdown was having a devastating impact on ‘prisoners’ emotional, psychological and physical wellbeing’.  Whilst some prisoners do have access to telephones, in-cell sanitation, showers, computer games and televisions, all too many are living in bare and austere prison cells.  One embarrassingly antiquated response of the Prison Service in an attempt to keep prisoners occupied during the lockdown has been to give them crayons and colouring in books.

It is too early to tell just how harmful this lockdown is going to be in terms of the wellbeing of prisoners, or indeed, how people are going to react once the lockdown is lifted and there is an outlet for their pent-up frustration.  What we do know is that in 2020 there were 318 deaths in prison in England and Wales and that 67 (of those currently classified) were self-inflicted deaths. In December 2020 alone, there were 24 Covid-19-related prisoner deaths and between March 2020 and January 2021, at least 86 prisoners died from the disease.  In this same 10-month period, 10,345 prisoners tested positive for Covid-19 – which is about 1 in 8 of the prison population – indicating the limited effectiveness of the current authoritarian approach.  We also know that there has been a dramatic increase in the number of self-harm incidents in women’s prisons, where according to Ministry of Justice data, during the 12 months from September 2019-September 2020 there was a reported 3,557 incidents of self-harm for every 1,000 women prisoners. It has also been recently reported that the first six months of 2020, 15,615 prisoners were put on ACCT (assessment, care in custody and teamwork) / suicide-watch plans in prisons in England and Wales, which is a significant increase on the numbers from the previous year.

Going to Court

In March 2020, we were approached by a member of the legal team representing a terminally ill prisoner in HMP Stocken who had bladder cancer.  The prisoner had a life expectancy of somewhere between three to 18 months but had been denied compassionate release under the Prison Service Order 600 and the Criminal Justice Act of 2003. The significant thing about compassionate release is that it is permanent, rather than release on a temporary licence (ROTL).

For various reasons, compassionate release was denied. His lawyers asked us to submit written evidence indicating the limitations of the existing lockdown policy and highlighting some of the difficulties that a prisoner would face in terms of living with a terminal illness in the context of COVID-19.  Our first submission drew attention to concerns raised by Her Majesty’s Chief Inspector of Prisons about the unhygienic environment in HMP Stocken, as well as evidencing broader concerns about the spread of COVID-19 in prisons across the country.  Our submission was in compliance with the broader position of the prisoner’s legal team that the current government approach to COVID-19 in prisons was presenting an existential threat to life and, more broadly, was a breach of human rights.

The Ministry of Justice’s case was that as the prisoner had perpetrated a violent crime and there was some ambiguity about how long he had to live, that he would continue to present a threat and was, therefore, a risk to public protection.  They argued that the Prison Service had made what they considered to be reasonable adjustments to existing policy to accommodate people who were terminally ill within prisons.

One of the basic rules for those giving expert evidence to the courts is that any claims made in written or verbal submissions must be fully substantiated by evidence and that the function of the expert is to help the court come to an informed decision rather than present an argument from a given political or ethical standpoint. Any claims must ‘stand up in court’ and rightly should be subjected to the greatest of scrutiny.  Yet, in their formal written response to our first submission, the state’s lawyers largely side-stepped the evidence we had marshalled and instead indicated that we might be less than credible witnesses because we were, and are, closely associated with the hugely nuanced and sophisticated theoretical and ethical perspective of abolitionism. Our submission was dismissed because we argued simply ‘against imprisonment’. This is a classic tactic pursued by the state when it has little or no answer to challenges to its authority: discredit critics, apply pejorative labels, simplify complex positions and suggest critics are biased while implying that the state’s position is exemplary and value free. It is the politics of distraction.

Operating within a very short deadline, we drafted a second submission, reiterating the evidential basis of our first submission and questioning some of the assumptions of both the prison service’s evidence and the skeleton case for the state. The government’s response was that HMP Stocken had introduced a successful shielding situation, and thus because of the reasonable adjustments made there would be no difficulties with the spread of COVID-19. This has proved to be a dangerous and inaccurate assumption.  On 18th February, according to a report in the Times, Public Health England indicated that 92 out of 117 prisons had experienced an outbreak of the virus. In the previous week, ‘an outbreak at HMP Stocken caused Rutland, England’s smallest county, to have the highest infection rate in the country with around about half of 199 new cases reported in the prison’. The local Rutland and Melton MP Alicia Kearns indicated that the number of COVID-19 infections at HMP Stocken at this time was approximately 100 prisoners.  According to the Times, ‘ten of its inmates [prisoners] ended up in intensive care in local hospitals’.

The case wended in a stalemate, when the Secretary of State’s legal team indicated that the prisoner might now be considered for release on temporary license, the ROTL.  Prior to the court hearing it had appeared that any possibility of ROTL was impossible and therefore had not been fully pursued.  The prisoner’s legal team continued to work for his release (both on ROTL and compassionate grounds) and drew upon the evidence we had submitted to strengthen their case.  In early August 2020, the prisoner was permanently released on compassionate grounds under Prison Service Order 600 and the Criminal Justice Act, the grounds that were originally pursued by the legal team.

Conclusion

The acceleration in COVID-19 cases in prison, and the traumatic physical and psychological impact of the lockdown on prisoners and their families, raises profound questions about the government’s strategy for protecting prisoners and ensuring their safety. It also raises profound questions about the abject failure of Ministers to grasp a unique opportunity to begin the process of radical decarceration, removing people from prison and investing in well-funded, well-staffed alternatives to custody. However, this government, like its Conservative, Coalition and Labour predecessors, remains welded to an iron, law and order ideology which, despite all of the evidence to the contrary, unconditionally supports the misplaced idea that the prison acts as a bulwark against crime – or at least crimes committed by the poor and the powerless as the systemic criminality of the powerful, and the harms they generate, remain protected by an unapologetic culture of immunity and impunity. Jeffrey Reiman and Paul Leighton’s powerful assertion that ‘the rich get richer and the poor get prison’ remains as true now in the middle of a pandemic as it ever was. The corrosive failure to develop radical alternatives to the prison is not simply a political choice but represents a moral failure of the highest degree. To detain dying prisoners inside until literally their last breathe is shameful. However, asking government Ministers to feel ashamed is like asking not only for the moon but for every star in the universe. Such a move requires a degree of self-awareness and humanity which the inhumane logic of neoliberalism, and the starkly degrading policies and practices of state institutions, neither encourage nor support. That is the brutal reality for prisoners, and their families, in this pandemic.

This blog was published simultaneously by the Harm and Evidence Research Collaborative at The Open University and the Centre for Criminalisation and Social Exclusion, Liverpool John Moores University. See: https://oucriminology.wordpress.com/

Primodos: The Next Steps Towards Justice

Sharon Hartles, Member of the Harm and Evidence Research Collaborative, The Open University

Wednesday 8th July 2020, marked the publication of the final report by the Independent Medicines and Medical Devices Safety Review, which was commissioned to examine the harmful effects of three treatments: Primodos, an oral hormone pregnancy test that caused birth defects;  sodium valproate , an epilepsy drug that also causes birth defects, and surgical mesh, a treatment for incontinence that causes chronic debilitating pain. Primodos was the most widely prescribed ‘hormone pregnancy test’ in the UK (and around the world) in the 1960s and 1970s until it was taken off the market in 1978.  First Do No Harm found that avoidable harm was caused because the UK Government and the Healthcare system failed in their duty to protect patients and regulate Primodos.

Source: https://twitter.com/IMMDSReview/status/1035530830792273920/photo/1

For the Primodos-affected members of the Association for Children Damaged by Hormone Pregnancy Tests, a lobby group, the findings and recommendations offered recognition ‘that hundreds of families have been wronged.’ Recommendation 1 of First Do No Harm was fulfilled when Matt Hancock apologised for the avoidable harm caused to those who suffered. However, after this welcomed and prompt first step towards justice, the next steps – the implementation of the remaining eight recommendations – have been fraught with resistance. 

Baroness Julia Cumberlege, a life peer who chaired the Independent Medicines and Medical Devices Safety Review, explicitly championed the need for the recommendations set out in First Do No Harm to be implemented with determination and urgency. Despite this, it has now been more than three months since the report was published, which may not seem like much time within the political agenda, and given the preoccupations with Covid and Brexit, but England is lagging behind Scotland. At a 9th July 2020, press conference, Julia Cumberlege raised concerns about the importance of implementing the report’s recommendations and the significance of not leaving it to “sit on a shelf and gather dust”. 

Yet, two months later, amid rumours the report was going to be buried, during a Parliamentary debate which took place on 2nd September 2020, the Baroness requested assurances from Ministers that the recommendations would be implemented. On the same date, MP and chair of the All-Party Parliamentary Group on Hormone Pregnancy Tests, Yasmin Qureshi, took a different approach. Namely, she accused Government Ministers of hiding behind irrelevant “legal action, which has no bearing on this report’s findings” to ignore their duty to implement First Do No Harm recommendations a point which she had previously voiced in a letter to Matt Hancock on 15th July 2020.

To its credit the Scottish Government has led the way; and on 1st September 2020, First Scottish Minister Nicola Sturgeon confirmed that Holyrood had accepted, in full, the recommendations of Baroness Cumberlege and would be appointing a Scottish Patient Safety Commissioner, “the emphasis of this new role is on the patient voice within the safety system.”  Moreover, on 13th September 2020, Andrew Davies, Shadow Minister for Health announced that a Welsh Conservative-led government would appoint ‘an independent patient safety commissioner in Wales.’ Currently, First Minister of Wales and the Welsh Labour-led government Mark Drakeford has not made any announcements regarding intentions towards the appointment of an Independent Patient Safety Commissioner.  

The Independent Medicines and Medical Devices Safety Review findings have had wider reaching ramifications. Primodos, a drug marketed by the West German pharmaceutical company Schering AG, was marketed in West Germany until 1981 as Duogynon. On 16th September 2020 the German Federal Ministry of Health announced it would be launching a review into whether or not the relationship between the regulator then the Federal Health Office today known as the Federal Institute for Drugs and Medical Devices  and the manufacturer then Schering AG, now Bayer AG led to ‘the drug remaining on the market despite concerns about its safety.’ 

In an article by Jason Farrell, Home Editor at Sky News, published on 19th September 2020, he noted ‘The German government has been reluctant to look into the issue and campaigners in Germany were relying on a breakthrough in the UK. That came after an independent review in Britain found in July that government health regulators had failed patients and that Primodos was responsible for “avoidable harm”.’ Although Jens Spahn German Federal Minster for Health, confirmed a research project into possible collusions between the German regulatory authority and the manufacturer; he also made it clear that “all the known findings and the scientific evidence do not currently support a causal link” between the hormone pregnancy test and birth defects.

Marie Lyon, chair of the Association for Children Damaged by Hormone Pregnancy Tests, met with the German Health Committee and MPs in March 2019 to present analyses from Oxford University scientists Carl Heneghan and Jeffrey Aronson. Based on the research conclusions she discussed a possible review of Primodos and Duogynon and its association with ‘increased risks of congenital malformations.’ The subsequent pressure from German politicians calling for a review, together with First Do No Harm findings played an instrumental part in sparking the German investigation into the Duogynon scandal. For Marie Lyon, who has been working with the Duogynon Network, an association for members affected by Duogynon, since 2012, the announcement came as “a huge step forward for the German campaign group and one we thought we would never see happen”.

Image: Courtesy of Sharon Hartles (adaption/remix of  I , IIIIIIV , VVI, VII ) MPs supporting calls forthe implementation of First Do No Harm recommendations. (From left to right – Sir Ed Davey, Leader of the Liberal Democrats, Ian Blackford, Westminster Leader of the SNP, Sir Jeffrey Donaldson, Leader of DUP Party in Westminster, Caroline Lucas, co-Leader of the Green Party, Liz Saville-Roberts, Plaid Cymru, Westminster Leader, Colum Eastwood,  Leader of the Social Democratic and Labour Party and Sir Keir Starmer, Leader of the Labour Party).

Back in the UK, in a bid to ensure that First Do No Harm is not ignored on 16th October 2020, six leaders of political parties: Sir Ed Davey, Ian Blackford, Sir Jeffrey Donaldson, Caroline Lucas, Liz Saville-Roberts and Colum Eastwood signed a joint letter to Prime Minister Boris Johnson urging him to ‘instruct the Department of Health to implement the findings of the Cumberlege Review’. According to the All-Party Parliamentary Group on Hormone Pregnancy Tests on 28th October 2020, Sir Keir Starmer added his signature of support, a notable action, because all seven opposition party leaders have presented a united front in calling on Boris Johnson to implement the Independent Medicines and Medical Devices Safety Review recommendations “in full and without delay.”

The UK government failed in its duty to regulate Primodos. The health care system failed in its duty to protect patients.  These failures resulted in avoidable harms spanning decades. For Primodos survivors these alleged life changing harms include: cardiac malformations, musculoskeletal, neurological, neurogenetical malformations, miscarriage and stillbirth. However, it was not the role of the Independent Medicines and Medical Devices Safety Review to determine whether or not there was ‘a causal association between HPT use and physical malformations’. Therefore the review findings have not laid to rest scientific debate around the contested harmful nature of this synthetic sex hormone. And so there are still open questions regarding claims about the effects caused. What is significant, is that Recommendation 4 of First Do No Harm states ‘The state and manufacturers have a moral responsibility to provide ex gratia payments to those who have experienced avoidable damage from the interventions we have reviewed.’  First Do No Harm may not have determined a causal association but recommendation 4 suggests that the Independent Medicines and Medical Devices Safety Review findings are a long way from establishing harmlessness.

Source: https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf

Now is not the time for the Government to unnecessarily prolong further suffering. It is time for these survivors of Primodos (and of sodium valproate and surgical mesh) to get the recognition and justice they so rightly deserve. In line with Recommendation 2, the appointment of an Independent Patient Safety Commissioner who will champion the patients’ voices and perspectives is long overdue. Furthermore, in accordance with Recommendation 9, action must be taken immediately to set up a task force in order to schedule a timetable for the implementation of the remaining recommendations as set out on 8th July 2020 by First Do No Harm.

To find out more about the Association for Children Damaged by Hormone Pregnancy Tests (ACDHPT) campaign and keep up to date with news, visit primodos.org. In addition, there are a number of ways you can support the campaign:

– Follow ACDHPT on Twitter
– Follow ACDHPT on Facebook
– Sign ACDHPT’s petition Protect patients and make our healthcare system safer for your children to Prime Minister Boris Johnson calling for him to implement the recommendations set out in the Cumberlege Review
– Encourage your MP to join the APPG for hormone pregnancy tests
– Make a donation to help ACDHPT continue their campaign
– Get in touch with Marie Lyon

This blog was originally published by the Harm and Evidence Research Collaborative at The Open University. See: http://www.open.ac.uk/researchcentres/herc/blog/primodos-next-steps-towards-justice

Primodos: The first step towards Justice

Sharon Hartles

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.

primodos-1

Source: Sky News

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.

primodos-2

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

primodos-3

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.

n 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.

This blog was published simultaneously by the Harm and Evidence Research Collaborative at The Open University.
See: https://oucriminology.wordpress.com/

The Perfect Storm: Reflections on the Death of Care Homes Residents and Social Care Workers

Vickie Cooper, Senior Lecturer in Criminology, The Open University

At the peak of the COVID-19 pandemic, 25,000 NHS inpatients were discharged into care homes and the responsibility to protect this particularly vulnerable population was passed onto the social care sector.

Like a mirror, coronavirus reflects the damage done under austerity. In 2010, right-wing governments blamed the deficit problem on public sector expenditure, and through savage cuts to welfare, they removed key support mechanisms for people out of work, in low-paid work and those who cannot work. The social care sector has been particularly affected by austerity. Since 2010, £8 billion has been wiped off the social care budget, directly affecting who can access social care and quality of care.  The devastating impacts of these cuts can be seen in the spike in mortality rates amongst people over 60 and care home residents, with 45,368 excess deaths counted over a 4 year period.

This was the mortality landscape under austerity, long before COVID-19. Now at the peak of the COVID-19 pandemic, government ministers have rolled out reckless policy decisions and have multiplied the risk of infection in a sector that was already struggling against the tide of austerity. These reckless policy decisions have led to the death of scores of care home residents and social care workers. It is estimated that approximately 16,000 care home residents have died directly or indirectly as a result of COVID, but data is still emerging and the actual number is still unknown. Not alone in this plight, critical attention must also be paid to the disproportionate number of social care workers who have died as a result of COVID 19.

Vickie pic 1 blog

Source: https://www.careuk.com

Mishandling at the Backdoor

At the peak of the pandemic 25,000 NHS inpatients were released into care homes. Health Ministers were quick to rule out the possibility that the NHS could meet the full demand of the COVID-19 pandemic. Already struggling with pre-existing demand and running on dwindling resources, the government knew that the NHS couldn’t survive a health crisis of this magnitude. Rather than face that inevitability, the government changed the goal posts and urged NHS trusts to move patients out the backdoor, to discharge them back into the community. And we’re hearing mixed messages about how this was coordinated, if it was coordinated at all.  NHS directors are claiming that they only discharged patients to residential homes where those homes agreed that it had the capacity and early on, Matt Hancock waded in with the vacuous promise to do ‘whatever it takes’ to support the social care sector. But care home providers claim that hospitals were discharging patients where there was no residential capacity and without protection or testing for the staff and residents. If the government’s farcical planning of PPE and testing is anything to go by, then we are probably safe to assume that decision to discharge NHS inpatients into care homes was not a joint or coordinated venture. On the contrary, testimonies and leaked reports reveal how government ministers repeatedly ignored expert advice not to discharge NHS patients into care homes and instead, local authorities ‘block-booked’ care home beds.

In February, just prior to lockdown, Public Health England National Infection Service advised the government not to discharge elderly patients from hospital to care homes, fearing that it will increase the spread of the virus. Age, pre-existing health conditions, shared communal facilities and regular contact with staff and care workers, were all known contributing factors seriously affecting care homes at the peak of the COVID pandemic.  Ignoring this advice, government reports then tried to peddle the idea that care homes were not at risk, claiming that its “very unlikely that anyone receiving care in a care home or the community will become infected.”

Now thousands of bereaved families want to know why: why the government made the dangerous decision to discharge 25,000 patients into under-resourced and unprepared care homes.

This may be a new virus, but government Ministers were not facing too many unknowns when considering the impact of COVID 19 on care homes. Experience could be drawn from other countries. Just before the UK went into lockdown, we saw neighbouring countries struggle with mass fatalities in care homes. In Spain, the military found care homes abandoned by staff and found residents left in their beds, dead. Italy, Belgium and Sweden have reported similar, but different devastating impacts of Covid in residential homes. The evidence emerging from those countries was unambiguous: without radical lockdown measures, care home residents faced multiple, acute risks. These deaths could have been avoided. Had the government heeded the warning and legislated for radical lockdown measures in care homes, the outcome could have been very different. Radical lockdown measures could have involved the use of temporary accommodation to quarantine and isolate residents and the provision of full-payment of staff to move into the care home. The care homes that successfully reduced the risk of infection, voluntarily implemented radical lockdown measures and recommendations, whereas care homes that continued to admit new residents, owing to pressures from NHS levels of discharge, saw a rise in infection rates. Even with the provision of basic protection measures, the outcome could have been very different. At the beginning of lockdown, care homes struggled to acquire sufficient PPE and the extra local authority funding they received went towards independently purchasing PPE from over-priced suppliers. Amidst the PPE calamity, the government also ceased community testing in March and limited these crucial protection measures to hospitals. To the dismay of health experts and public at large, the government ceased community testing in support of ‘herd immunity’, which they suggested could delay the spread of the virus and ‘flatten the curve’. The government’s swaggering commitment to herd immunity led the implementation of dangerous political decisions that multiplied the risk of infection for this vulnerable population and social care staff.

Official health guidance published in February 25th states: “it’s unlikely that anyone receiving care in a care home or the community will become infected.”

Vickie blog pic 2

Source: https://www.gov.uk

Institutional racism and structural inequality

The other silent killer in this uncomfortable story is the labour market and rampant inequality underpinning the social care sector – compared to other areas of the labour market. Blame has been apportioned with the model of working, with staff working between care homes and coming into contact with multiple different residents in any one shift. But rather than look to individual staff, we need to shine a light on the labour market driving the social care sector: the low-paid, precarious workers it relies upon, the creeping privatisation of sector at large, and regulatory framework tasked with monitoring the network of  public and private providers. It is these volatile economic conditions that drive the risk of infection and seriously undermine the health and safety conditions for care home residents and social care workers.

And these concerns are reflected in the data on coronavirus-related deaths, per occupation. The Office for National Statistics show that social care workers are particularly vulnerable to infection, where a disproportionate number of these workers have died as a result of COVID-19:

Men and women working in social care, a group including care workers and home carers, both had significantly raised rates of death involving COVID-19, with rates of 23.4 deaths per 100,000 males (45 deaths) and 9.6 deaths per 100,000 females (86 deaths).

The institutional and economic landscape of the social care sector also reinforces the same racialised and structural inequalities that are unravelling under COVID-19.  People from black, Asian and minority ethnic backgrounds constitute a disproportionately high number of social care workers. In England, 1 in 5 social care workers in England are black, Asian or from a minority ethnic background, but this representation varies geographically. In London, for example, 67 per cent of social care workers are black, Asian or from minority ethnic backgrounds.  In terms of waged-labour, the social care sector notoriously ranks amongst the lowest paid sectors within the labour market, with a high number of staff recruited on zero-hour contracts, which is the most precarious form of employment. With such a low-waged sector, social care employers struggle to recruit and retain staff and draw heavily upon agency workers, bank staff and migrant workers as a source of low-waged labour.

How did such a critical source of care and support to so many become so volatile? Social care workers provide a crucial provision of care and support to millions of vulnerable people in society, but the scale of inequality they endure, compounded by years of government disinvestment, has culminated in the countless number of deaths of already disenfranchised and marginalised groups. The risks presented under COVID-19 are particularly acute for these groups because of the targeted nature of the political decisions and policies implemented, long before and during this pandemic. Political decisions were made that prioritised groups who matter and downplayed the risks of those who matter less. From care home residents to social care staff, government ministers ignored and downplayed all the known risks and rather than heed the warnings, they put them at even greater risk by releasing scores of vulnerable patients into the community, accommodated them in communal settings and refused the most basic safety provisions for the social care staff tasked with protecting them.

This blog was originally published by the Harm and Evidence Research Collaborative at The Open University. See: https://oucriminology.wordpress.com/ 

Moving on: Burying Coronavirus Deaths

Joe Sim, Professor of Criminology, Liverpool John Moores University and Steve Tombs, Professor of Criminology, The Open University.

The first reported UK death as a result of coronavirus was recorded on 2nd March. It was followed by three hospital deaths the next day – the day of the first Downing Street press briefing, where Boris Johnson said: ‘I was at a hospital the other night where I think there were actually a few coronavirus patients and I shook hands with everybody.’ Johnson would continue shaking hands until at least 9th March when it was confirmed that a fifth person had died. In fact, updated NHS England data indicated that 16 people had died by 9th March, including three on the day Johnson declared that he was still shaking hands.

Then, on 23rd March, Johnson went on to announce what was to become quickly known as the ‘lockdown’ – albeit a misleading euphemism as many had to continue to work, if under far from normal conditions. These were the ‘key’ workers, a group covering not only health, social care and emergency service staff, but also included transport and shop workers, those in the food supply chain, cleaners, postmen and postwomen, refuse collectors, and, albeit less celebrated, workers in construction, security and the diffuse areas of the gig economy. These groups who worked through the ‘lockdown’, mostly in “low-paid, manual jobs”, were, it was revealed in early May by the Office for National Statistics (ONS), up to four times more likely to be killed by exposure to the virus than those in “professional and technical roles”.

Counting the Cost of Coronavirus?

Within three months, by 8th June, the government’s record on the coronavirus was described as “shameful”. In a global context, the UK’s sorry status was reported as follows:

5th in the total number of cases;
4th in terms of deaths per million of the population;
2nd in the total number of deaths;
1st in excess deaths per million of the population.

Coronovirus deaths

Source: BBC

One week later, on June 16th, the Office for National Statistics revealed that the total number of excess deaths – the statistic that is regarded as the most comprehensive for measuring the impact of a pandemic – had reached 64,500, or 671 a day, dating back to 2nd March.

This gruesome figure for excess deaths does not begin to account for the cancellation of hospital operations for ongoing medical conditions which has added another lethal layer beyond the devastating immediacy of the virus. To take one example: it is estimated that a further 18,000 extra cancer-related deaths could occur over the next year as a result of delays in cancer treatment during the height of the pandemic.

Nor, of course, do stark figures of death say anything about the traumatic desolation experienced by, and the multitude of harms caused to, the anguished families, relatives and friends of the deceased, a toll which is incalculable but increasingly being hidden, ignored and marginalized – except, that is, for the frankly insulting platitude of ‘our hearts go out to all those who have lost loved ones’ message mealy-mouthed by whichever politician happened to draw the short straw to front the Government’s daily press briefing and was thereby obliged to mention the hundreds of deaths the previous day, before moving on, of course, to ‘the next slide’.

Draw a Line and Move on

Exactly one week after the ONS had revealed a total of excess deaths close to 65,000, Johnson, in typically upbeat tone, announced in the Commons the effective end of lockdown in England, dubbed by himself as the end of “our long national hibernation”, and by others as ‘Super Saturday’, or as the UK’s 4th July ‘Independence day’ which the Telegraph had demanded weeks earlier.

Johnson went on to “encourage people to take advantage of the freedoms that they are rightly reacquiring”, wanting to see “people out in the shops—it is a fantastic thing to see. Yes, I want to see people taking advantage of hospitality again—a wonderful thing”. And he urged those in tourism to send out a welcoming signal ​to people from other parts of our country and to roll out the welcome mat, rather than the “Not welcome here” sign. The next day he spent much of Prime Minister’s Questions encouraging MPs from seaside towns to throw open their doors and extend hospitality to visitors.

BBC Beach

Source: BBC

As he spoke, a mini-heatwave was moving northwards across the UK, accompanied by mass gatherings in parks, resorts and city centres. Some of these resulted in clashes between people and police. The net effect was to generate real fears of social disorder two weeks later, when such gatherings, not least in and around bars, would become quasi-legal. Two days later, on 26th June, it was announced at the Government’s daily coronavirus press conference that it would be the last.

Back to Business and Burying the Dead

However, over the previous 24 hours to 26th June, 186 people had died from the virus. In the seven days up to that day, there had been 848 such deaths, a rolling average of 121 a day. This was, of course, considerably down on the reported April 8th peak, when 1,445 people died from Covid-19 in 24 hours – one of 22 consecutive days on which more than 1,000 people died in the UK every day.

But this ‘low’ figure of of 848 weekly deaths, unnoticed as a return to business as usual was being eagerly heralded, has to be placed in the context of more ‘normal’ times and more routine Government priorities. For example, in the year up to September 2019, there were 617 homicides in England and Wales. Or, if the same number of 121 people who died on an average day that week had been killed in a multi-fatality incident – an industrial disaster, plane crash or ‘terrorist attack’ – the cries of outrage would have been deafening. Not with COVID-19, though. The dominant discourse had become, and remains, that it was ‘unprecedented’, a word that appears to cover much – every death toll, every error, every incompetence, every lack of preparedness – but does not really say anything.

So while 848 people died, this was the week in which the Government sent out signals that the crisis was more or less over. Only local “flare ups” were to be feared should now fully responsibilised citizens fail to act to protect each other by maintaining ‘1 meter-plus’ distancing at work in shops, offices and factories – where possible – or as they drank and ate in bars, restaurants and cafes whilst planning holidays to kick-start the hospitality economy, all the time once again freely moving around and between our cities and towns.

Given this bizarre juxtaposition – still over 100 officially recorded deaths a day in the context of the effective announcement of normality – how were the deaths covered in the broadcasting and print media?

Taking the main news broadcasts on Friday 26th June as a snapshot, there was no coverage at all of the daily death rates on Channel 4 News broadcast between 7 and 8pm. The BBC’s main news bulletin at 10pm did provide some coverage of the virus, including the daily death rate. This lasted for 34 seconds. In contrast, Liverpool’s Premier League Championship win took up 6 minutes and 20 seconds, 11 times the coverage of the daily death rate. This, in turn, was almost a full minute more than the lead story which concerned the appalling devastation in Yemen where one child was dying every ten minutes due to a combination of war and the virus. So even here the broadcaster still gave more air time to football than to the harrowing and utterly preventable deaths of children.

On ITV’s News at 10, COVID-19 was covered for 1 minute 39 seconds. The programme at least recognised that the 186 deaths was the highest daily increase for 10 days but did also introduce the usual caveats about focussing on the rolling 7-day average rather than looking at one day’s figures. Liverpool’s League Championship win was given twice the coverage, at 3 minutes 22 seconds.

The main headlines on the front pages of the nine national newspapers on the morning of 27th June also contained nothing about the latest number of deaths, but did contain advice for foreign holidays: Green Light for Hols (The Mirror) and Fly Out for Sun, Sea and 70% off (Daily Mail).

Clearly, at this point, we would not claim that these broadcasts and headlines were based on any kind of random sample. However, they do reinforce our argument and suspicion about the government’s shameless desire to move the caravan of death on and to open up the country again, for British business, beer and holidays. Quite literally, in human and media terms, the disposables have been disposed of. Coronavirus death has become normalised.

Conclusion

Several questions become crucial as we are on the brink of the weekend on which ‘lockdown’ is released – albeit as tighter restrictions on work and travel have been re-imposed on Leicester, a city of over half a million and one of the most ethnically diverse in England, facts-on the-ground indicating that there is no real, only a discursive, ‘moving on’.

These questions include: where is the political discussion about the devastating and still unfolding toll of avoidable deaths? Who or what will be held accountable, and how? And, will there be a time when the daily rate of death ever again becomes politically and morally unacceptable and a focus for the media, politicians, the government and the wider population? Or, will the facts around the horrendous levels of preventable deaths, and the long-term devastation wrought by the virus on hundreds of thousands of lives be, in the words of Hannah Arendt ‘denied and distorted, often covered up by reams of falsehoods or simply allowed to fall into oblivion[?]’

If this happened it would be morally and politically intolerable. However, at this dangerous moment it would not be surprising given the political forces at work in constructing the dominant, consensual narrative that society needs to move on to the promised land of Brexit and to the ideological normality that the UK has a world-beating, track record in every conceivable area – excluding, of course, in preventing COVID-19 deaths.

This blog was published simultaneously by the Harm and Evidence Research Collaborative at The Open University. See: https://oucriminology.wordpress.com/  

“You despicable beasts”: Dignity Funerals and commodified death in the spotlight

Samantha Fletcher and William McGowan

 

 

 

 

In late March 2020, Dignity Plc were on the wrong end of a string of angry messages from members of the public who had received advertising leaflets through their letterboxes. The leaflets read “Save money and protect your loved ones with a Dignity Funeral Plan”. At the very top of the page a brightly coloured offer boasted a “£100 off Discount ends 30 April”.

As the UK headed into coronavirus lockdown, the timing could not have been worse. One user commented: “@Dignity_UK you despicable beasts. Mass posting flyers through doors on the first day of lockdown is abhorrent and you should be ashamed!!!!” Another highlighted the emotional impact on local residents: “#badmarketing you couldn’t make it up […] It’s really upset some elderly residents”. Several people bemoaned ‘profiteering from misery’, accusing Dignity of “callous commercialism” and stating: “Absolutely disgusted […]. We are in lockdown and this is posted to our house and to pensioners’ bungalows! Putting people’s lives at risk for profiteering! Sickening practices.”

Dignity was put on the back foot immediately, issuing repeat apologies and promising to stop all marketing activity, as citizens from far and wide lambasted their advertising strategy. One user contributed their photograph of the funeral leaflet to a separate thread –“compiling a list of people to avoid after we return to normal. The c**ts list!” – a thread kicked off with Virgin tycoon Richard Branson, Mike Ashley of Sports Direct, Wetherspoons owner Tim Martin and celebrity chef Rick Stein, each included for their appalling treatment of staff during the economic downturn.

Who are Dignity Plc?

Let’s roll back 12 months. Following a mild winter, in May 2019 Dignity expressed concerns that a shortfall in projected death rates in the first quarter of 2019 was hurting their underlying profits by nearly £7m. Deaths were down 12% for the period, leaving the firm hoping things would “improve” in the second half of the year. Using language many people might not readily or comfortably associate with death and dying, they accepted:

“Operating performance in the first quarter was below the board’s expectations as a result of the significantly lower than expected number of deaths. Funeral market share and average income were in line with the board’s expectations.”

As the world continues to make sense of the Covid-19 crisis, it has brought attention to a whole range of commodity networks, supply chains, and labour processes that usually go unseen or are taken-for-granted. We are often better able to see how things work when they stop working. Or, in the case of Dignity’s mistimed marketing, when business as usual is out of tune with the mood music of the day.

So, what, or who, is Dignity? Dignity Plc, to be more precise, is the UK’s largest “single” funeral provider. It is currently the only publicly listed UK funeral provider on the stock market, with reported annual turnovers of £324m and £316m in 2017 and 2018 respectively.

Dignity has over 350 subsidiary companies within its somewhat dizzying corporate structure. Many have names such as ‘Dignity Services’, ‘Dignity Limited’, ‘Dignity Finance Holdings Limited’, ‘Dignity Finance plc’, ‘Dignity Holdings No.2 Limited’, ‘Dignity Holdings No.3 Limited’, etc., but most are funeral directors that Dignity has bought out, retaining their original trading names such as ‘G.M. Charlesworth & Son Limited’ or ‘F.E.J. Green & Sons Limited’, in a bid to keep the family-run traditional high street feel. Many such funeral directors have premises in several locations, meaning Dignity control over 700 individual funeral branches – with plans for further expansion.

Crematoria ownership represents significant capital accumulation for the corporate group too. By June 2018, there were 293 crematoria in the UK — 183 operated by local State authorities and 110 by private companies. Of these private companies, Dignity is again the largest operator with 46 crematoria. And these expanding operations mean Dignity has been building up a considerable real estate portfolio, ‘driven by the need to meet shareholder and investor expectations in terms of profit and growth’.

As with many other publicly listed companies, Dignity’s listed shareholders include many of the big investment funds that own most of the world’s capital – the likes of Standard Life, Aviva, Barclays and Blackrock.

But Dignity plc’s largest current shareholder, with 26% ownership, is a smaller specialist UK investment manager called Phoenix Asset Partners. Based in Barnes, West London, Phoenix is headed by founding partner Gary Channon, who had his “investing epiphany” after reading US billionaire investment guru Warren Buffet.

Channon’s claim to be the Warren Buffet of Barnes is boosted in a glowing recommendation from the Financial Times’ Investors Chronicle magazine, which says Phoenix’s UK investment fund has “smashed the total return of the FTSE All-Share since its launch in May 1998.” Channon’s strategy is to buy chunks of a small number of UK listed companies he believes are going cheap – “good companies that can be bought for less than half their so-called ‘intrinsic value’ due to short-term problems.”


Gary Channon, the Warren Buffet of Barnes

Dignity’s troubles

Unfortunately for Phoenix, Dignity hasn’t yet made the expected turnaround – according to Investors Chronicle, the company has been a “major drag” on Phoenix’s overall performance. With many other shareholders pulling out, the market value of the company has collapsed – Dignity’s share price had fallen to a quarter of its peak 2016 level by 2019.

Again, one of the main reasons Dignity had given for its declining profits before the pandemic was a falling death rate. On top of that, the company has faced increasing competition, including what the Evening Standard described as a “price war” with its main rival, Cooperative Funerals. This has pushed the company to start cutting prices on its cheaper funeral products.

Then there is the fact that Dignity is saddled with heavy debts. At the end of 2019, the company owed £542 million to the bond market. This, plus its other liabilities, were actually worth more than its assets, which is never a sign of financial health. Dignity borrowed heavily to fund its buyouts of local funeral directors and crematoria, and to climb to the top of the industry. This strategy worked out so long as prices and profits kept rising – but makes the company vulnerable if the market turns.

Finally, there is a big unknown that may have spooked investors: two ongoing regulatory investigations into the funeral industry.

In March 2019, off the back of a preliminary consultation in November 2018, the Competition and Markets Authority (CMA) announced it would be launching ‘an in-depth market investigation into the funerals sector’. This will investigate the soaring cost of funerals over more than a decade, and current ways of operating by business providers of these services. Then in June 2019, in light of accusations of ‘high pressure’ and ‘bullying tactics’, the UK Treasury announced plans to seek to regulate funeral service providers through the Financial Conduct Authority (FCA).

The results of both investigations were due for completion and release in late 2020, but have been delayed for the time being due to the Covid19 pandemic.


Clive Wiley, chairman of the board

The high cost of dying

As Dignity and its shareholders complain about price cuts and dropping profits, we need to put those complaints against a longer-term backdrop. Prices and profits in the funeral trade soared for more a decade from the early 2000s until the late 2010s. The average cost of a funeral is now many times higher than it was 20 years ago, and this cost has largely been driven, and pocketed by, funeral companies.

In March 2019, the CMA published a detailed “Funerals Market Study” as part of “phase one” of its investigation. This set out some key points, including that:

“Over the past 14 years, the price of the essential elements of a funeral is estimated to have grown by 6% annually, twice the inflation rate over this period.” (p.6)

The study further concluded that:

“for a considerable number of years the largest firms of funeral directors have implemented consistently large annual price increases, without reference to underlying operating cost pressures.” (p.6)

Since 2002, Dignity maintained a company policy of increasing their prices by 7% annually (p.99-100). One reason the companies have been able to get away with this relates to the nature of their product. According to the CMA study (p.100), only 8% of bereaved families “shop around” for alternatives.

For the companies, this long boom of rising prices has meant extremely high profit margins. The CMA study compared the profits of Dignity and other big UK operators with equivalent companies in Europe, the US, Canada and Australia, for the four years between 2014 and 2017. It found that profit margins (before deductions) in these regions were between 19-26% on average. Some were much lower. For example, Ahorn AG in Germany and the Park Lawn Corporation in Canada were 6-13%. In contrast:

“Dignity’s profit margins have been 36-38% in all years, so more than 10% higher than international benchmarks. [..] Dignity’s margin appears to have been significantly higher than both international benchmarks and larger UK companies in the funerals sector.” (p.123)

But while funeral profits were being driven up to finance the asset growth and accumulating debts described above, many of the households paying for them were facing the violent impacts of austerity. Basic average funeral costs are now over £4,000, or more than £9,000 when professional fees and discretionary extras such as memorials, flowers, and catering costs are considered – compared to around £1,900 in the early 2000s. For many, the inability to pay these rising costs means the growth of personal debt and funeral poverty. This trend is one example of a much broader serious problem in society today – the transference of corporate debts into personal bank accounts.

As the CMA study notes (pages 20-21), total funeral expenditure varies very little by average household income: households earning over £100,000 per year do not pay 10 times more than households on less than £10,000. In 2017, the total expenditure of a family in the lowest 10% of the population by income was £11,050. This means that a “basic” funeral could cost nearly 40% of the total year’s budget – higher than total spends for food, energy and clothing combined (at 26%).

In short, this morphing of the market hits working-class families, exacerbating income inequality and compounding existing poverty in the UK.

Dignity have responded to this problem, in their own way, by promoting a range of budget alternatives through their sister brand Simplicity Cremations – again, readers may have noticed their avid marketing campaigns. Simplicity provides direct cremations without the added extras associated with an expensive “send off”. Like other Dignity products, they also offer pre-need payment plans – a major point for regulatory scrutiny at the heart of recent investigations.

Despite these efforts, and being able to stake their claim as the largest provider, Dignity are lurching from one crisis to another. Their CEO Mike McCollum recently left the company with immediate effect and their profits have actually fallen during the pandemic as they are unable to sell the full range of service extras that some of these profits rely on. After almost two decades of extortionate price increasing – “a core part of Dignity’s strategy for a considerable period of time” (CMA study cited above, p.99) – the inherent contradictions of exponential growth and driving capital accumulation alongside debt accumulation look like they are finally taking their toll. This period has also served as a painful reminder to so many mourners that what they miss most at the funerals of their loved ones is not the expensive funeral service add-ons, but their family and friends.

Need for systemic change

Soon after Dignity received the above barrage of criticism we outlined at the start of this article, the UK government introduced the Coronavirus Act 2020. Nestled among a raft of emergency changes to existing legislation are a series of “temporary” changes to the funeral industry, which will continue to “have a significant impact on what happens to the dead and how funerals are conducted in the coming weeks and months”.

As well as family-only funerals with limited attendance, this includes a more flexible approach to registering deaths, scrapping inquests for suspected Covid-19 deaths, and multi-organisation provision for transporting and storing growing numbers of bodies which would otherwise overwhelm existing mortuaries. While these are emergency measures, which must subject to ongoing scrutiny, they do nothing to address long-standing issues within the industry including poor working conditions and inadequate protection for workers.

Similarly, we can ask whether the CMA and FCA investigations will even begin to satisfactorily address all the issues of cost, profit, competition and exploitation that shape the industry. At best, these investigations aim to ensure the industry is ‘fair’ under the rules of the market itself – there is no hint of any significant or radical challenge to the way funerals are marketised, financialised and provided.

The funeral industry is a peculiar space that provides a vital frontline service every single day. Without serious systemic change, there will be no end to the vulgarity in profiting from death that people now recognise more acutely. While not at all downplaying the seriousness of the Covid-19 crisis, we want to raise broader questions about unfettered corporate freedoms to profit from … well, strictly anything, including death, at all times, both in the midst of a global pandemic and beyond.

** This blog was first published by Corporate Watch on 10th June 2020 https://corporatewatch.org/you-despicable-beasts-dignity-funerals-and-commodified-death-in-the-spotlight/ **

‘Calling us heroes just makes it ok when we die’: Constructing Coronavirus News

Joe Sim, Professor of Criminology, Liverpool John Moores University

If I die, I don’t want to be remembered as a hero. I want my death to make you angry too. I want you to politicize my death. I want you to use it as fuel to demand change in this industry, to demand protection, living wages, and safe working conditions for nurses and ALL workers. Use my death to mobilize others. Use my name at the bargaining table. Use my name to shame those who have profited or failed to act, leaving us to clean up the mess. Don’t say “heaven has gained an angel.” Tell them negligence and greed has murdered a person for choosing a career dedicated to compassion and service.

These poignant words were written by Emily Pierskalla, an American nurse, and were cited in an article published in mid-April which focused on the daily Downing Street press briefings about the coronavirus. The article debunked a number of myths which had been fostered through these briefings: glorifying science despite the fact that knowledge about the virus was in its infancy; the launch of a badge for carers in the middle of a pandemic (when these same workers could not access PPE equipment to protect their lives); blaming China for the government’s initial inaction; focusing on the health of the Prime Minister; and the distractions generated by the ‘clap for carers’ campaign. The cloistered sterility of the briefings – ‘wooden and evasive’ – according to one commentator – meant that the government was ‘manufacturing news’:

The government is tightly controlling the news agenda. Its daily press briefings are not keeping it accountable; they’re allowing it to recycle soundbites. While lobby journalists don’t always do the best job, they have – at times – tried to ask some decent questions. It’s just the questions aren’t answered; and because it’s a press conference, there isn’t the scrutiny of an actual interview.

On April 14th, the lack of face-to-face interviews was highlighted on Channel 4 News. The broadcaster had asked government ministers for an interview on 8 consecutive days. None was forthcoming.

The staged, stilted nature of the briefings was legitimated by the presence of scientists to whom the politicians deferred as a matter of course. However, even here, the idea that there was a coronavirus reality that could be objectively measured through a scientific consensus was also problematic. As Professor Brian Cox noted:

There’s no such thing as ‘the science’, which is a key lesson. If you hear a politician say ‘we’re following the science’, then what that means is they don’t really understand what science is. There isn’t such a thing as ‘the science’. Science is a mindset.

The restricted format generated a specific narrative, a drive towards a consensus which constructed insiders – those who supported a response based on national unity – and outsiders – those who did not. Inevitably, this drive marginalized other narratives and distracted attention from the devastatingly bad decisions the Prime Minister, and his government, had made. For Nesrine Malik:

Here’s what we already know. The government delayed implementing a lockdown for no clear reason – perhaps it was the prime minister’s outsized regard for the “freedom-loving instincts of the British people”, or a misguided bid to pursue “herd immunity” – and then reversed its position. Weeks were wasted, and thousands of lives were lost. The government abruptly stopped its contact-tracing programme in mid-March; it claimed mass testing wasn’t necessary, and then U-turned while repeatedly shifting the goalposts on the number of tests to be done. It did not provide adequate levels of PPE for NHS and care home staff, and hundreds of workers are dying. This government’s Conservative predecessors underfunded the NHS and undermined the UK’s preparedness for a major crisis such as a pandemic.

Professor John Ashton too expressed his doubts about the briefings:

It was the failure to convene [the emergency committee] Cobra at the beginning of February that meant everything else flowed from it, the failure to order equipment etc. Now we are into the cover-up. Any journalist worth their salt should boycott this propaganda [the daily briefing]. They don’t answer any questions. The chief nurse deflected the question about the number of nurses and doctors who died because of confidentiality. She wasn’t being asked about individuals, she was being asked about numbers.

Ashton also pointed to an issue that was to come to dominate the debate – care home deaths. For him, people were dying at home, and in care homes, without being tested while others were being ‘sent home to die before they had been tested. There are probably large numbers of people who are not being counted’.

At the end of April, Alistair Campbell pointed to the journalists’ lack of preparation for the briefings, the ‘platitudes and homilies’ on which the government’s answers were based and the off-the-record briefings conducted away from public scrutiny. Pippa Crerar, the Political Editor of the Daily Mirror, noted that the list of broadcasters who could ask questions was drawn up by 10 Downing Street. Furthermore, when the briefings first began journalists asked one question after which their microphone was turned off by Downing Street so there was no follow-up. For her:

…often the biggest problem we contend with is the lack of answers that are forthcoming from the government, it can be really frustrating when you ask a question and then all you get back is the government’s pre-planned line and that happens quite a lot…when you ask a specific question about …testing capacity or different elements of PPE getting to the front line and you get a sort of stock response that tells you nothing then it does feel very frustrating.

On April 27th, BBC 1’s Panorama highlighted the deadly impact of the shortage of PPE and other equipment. Directly reflecting the words of Emily Pierskalla which began this blog, the Thursday night ritual of clapping for carers was criticized by some staff on the ground who felt that it was glossing over the shortages on some of the wards. One nurse, working in intensive care, told the programme, ‘calling us heroes just makes it ok when we die.’ Despite Panorama’s intervention, the press headlines the following morning were overwhelmingly concerned about the ending of the lockdown. All that is except one. Reflecting the contradictions in the media’s coverage, the Daily Mail, not noted for its criticism of the government, carried as its main headline – Doctors’ PPE Desperation; 1 in 4 forced to reuse protective clothing; Failure to stockpile gowns & visors dates back 11 YEARS. In coming back to PPE, the newspaper returned to an issue which had dominated the debate for weeks yet had virtually disappeared from the press briefings and the other print outlets over the previous two days. 

Another medic pointed to the iniquity of the government’s position, in praising staff on the ground as ’heroes even while watching us die without proper personal protective equipment. How dare they? Testimony from staff forced to wear bin bags, Marigolds and even sanitary towels as facial protection should shame every member of the cabinet’.

At the end of April, Nesrine Malik, while recognizing that the media did not speak with one voice, was critical of the overall message that was being presented:

For all that the facts look damning for the government, the overall picture presented to the public has not been notable for its scrutiny and scepticism. This is not a swipe at an amorphous “media” failing to hold the government to account. Many journalists are probing and investigating – and getting flak for doing so. But much of the press has either stenographically taken the government’s word for things, or relegated the awkward matter of our appalling death toll to a mere footnote amid other concerns about life under lockdown. Last week, The Sun had a front-page splash that read “Lockdown blow. Pubs shut until Xmas”. On a small image of a Covid-19 virus splodge on the same page, it said “596 dead. See page 4”. Other papers, such as the Daily Telegraph, have effectively become mouthpieces for the government.

On Saturday May 2nd, the circle of distraction was complete. At the daily press briefing it was announced that the number of deaths had increased to 28,131, up by 621 from the previous day. No questions were asked from the press or public (who had been coopted into the briefings on April 27th) about these figures. The final question came from a reporter from the Sun on Sunday (the newspaper to which Johnson gave his only post-hospital interview) who was positioned in front of one of The Sun’s most notorious front pages, published during the Falklands War. When an Argentinian ship, the General Belgrano, was torpedoed with the loss of over 300 lives, many of them teenage conscripts, the newspaper’s headline – Gotcha – epitomized the merciless nature of its coverage which unequivocally supported British forces in the Falklands. The paper’s undiluted militarism, as ever, was reinforced by a sense of ‘fun’:

Page Three girls were given a military theme – ‘all shipshape and Bristols [geddit] fashion’. ‘THE SUN SAYS KNICKERS TO ARGENTINA!’ was one editorial brainwave featuring pictures of semi-naked girls ‘sporting specially made underwear embroidered across the front with the proud name of the ship on which a husband or boyfriend is serving’.

To see Gotcha in a question and answer session about a pandemic where so many had endured such traumatic desolation and devastation was another nadir in what passed for journalism in many, though not all, of the daily press briefings.

Tabloid ‘Humour’ and Human Interest Stories

It was not only the daily press conferences which were problematic. As ever, the tabloid coverage was based on generating a sense of sexualized ‘fun’. On Saturday March 28th, the Daily Star ran the following headline:

Daily star image 1

This headline followed the largest day-on-day increase in deaths at the time. On Friday March 27th, the number of deaths rose by 34% to 1019, up by 260 from the previous day. On April 1st, the newspaper produced another cover which (presumably) reflected a ‘fun’ date in the British calendar:

Daily star image 2 

On March 31st, the day before the Star’s ‘fun’ headline, 381 people died in the UK, a record number at the time, taking the death toll to 1789.

And then there were the human interest stories designed to shore up morale: Boris Johnson’s health took up all but 9 minutes of BBC 2’s flagship Newsnight programme on April 6th while on April 10th, Good Friday, the Sun’s headline ‘BORIS IS OUT (Now that really is a Good Friday!), was published on the day that the UK recorded the highest number of deaths in Europe; the Queen’s speech to the nation; Johnson’s new child; and 99-year old Captain Tom Moore’s efforts to raise money for the NHS. These stories distracted attention from other issues. In the case of Captain Moore, there were no questions asked about why a centenarian was privately raising funds – £31 million – for the NHS. In raising this sum, Captain Moore raised £10 million more than the £21 million spent by Jeremy Hunt on consultants to legitimate the brutal cuts imposed on the NHS.

Coronavirus Masculinity

The focus on the Prime Minister’s health, and the birth of his son, also distracted attention from his attitude in the early days of the virus when he had, without sustained challenge from the media, talked about shaking hands at a hospital where there were patients stricken by the virus. In doing so, he was plugging into the politics of coronavirus masculinity, and the patriarchal sense of masculine entitlement, displayed by ‘strong men’ politicians internationally: Trump in America, Erdogan in Turkey, Orban in Hungary, Modi in India, Putin in Russia and Bolsonaro in Brazil who encapsulated his brutal response to the crisis by declaring that ‘[w]e’re going to tackle the virus but tackle it like fucking men – not like kids.’ On May 13th, it was reported that the country saw a record rise in the number of daily deaths to nearly 900 taking the number of deaths to more than 12,000.

In the UK, the analogy with war – a persistent, masculine theme in political and popular consciousness, and one which had been a central discourse in the tortured debates around Brexit – was used by the government, and Johnson, in particular, in media briefings, to mobilize the country against an external enemy. However, this was ‘a problematic analogy as what is mainly needed to tackle COVID-19 is care, social solidarity and community support – not fighting and violence’:

These patriarchal discourses can have serious implications for government policy, such as encouraging overly militaristic, authoritarian approaches, and prioritising male-dominated sectors of the economy and society. For instance, women are more likely to be in temporary, informal or precarious work which falls outside the protection packages being established.

From the perspective of those on the ground, such ‘war talk’ was ‘an altogether different matter’. It was a:

….clever and calculated distraction. The worth of nurses is so self-evident to this government, for instance, that they are routinely compelled to use foodbanks. And Hancock may have offered Britain’s 1.5 million carers a badge recently, yet two-thirds of them are paid the minimum wage, with many on punitive zero-hours contracts. How convenient that now, with the spotlight on their vital work, their poverty wages are being augmented by lavish ministerial clapping.

The writer also pointed out that those Conservative MPs who were applauding NHS workers, ‘voted down a proper pay rise for nurses’ in 2017. This included Rishi Sunak, Dominic Raab, Matt Hancock and Boris Johnson. The decision was cheered in the House of Commons.

Contradictions and Contingencies

Inevitably, there were (and are) contradictions and contingencies within the media. For one thing, the public were not enamored with the coverage. The first study of the public’s attitude towards the role of broadcasters in the pandemic found that they wanted media personnel to be more critical of the government:

Far from the public losing faith in journalists or asking them to rally round the flag, our research shows most people trust broadcast media, but want more critical scrutiny of the government. This suggests broadcasters should not be cowed by politicians or commentators, but emboldened by the public who want them to challenge the government about how well they are handling the pandemic.

Furthermore, the devastating, human impact of the virus was not ignored. The point is that it did not merit the same attention. On April 7th, Channel 4 News reported that Thomas Harvey had died from the virus. At that point, Thomas was the 15th NHS worker to die. He had been an NHS worker for more than two decades. According to his desolate family, they had tried, on four occasions, to have him admitted to hospital and had been refused each time. The brief discussion about Thomas’s death was preceded by a 20 minute piece on the Prime Minister’s hospitalisation. The arcane nuances in the British constitution – what was the role of the Deputy Prime Minister, who was in charge, who would make decisions? – obsessed journalists as they attempted to outdo each other to be first with the latest, breaking news about Johnson’s health and divulge what they had learned, or rather what they had been briefed about, to what they thought was an expectant nation.

Clearly, other issues were covered – the lack of PPE; deaths in care homes; the desperate rise in domestic violence; the disproportionate number of BAME deaths inside and outside of the NHS; the potential number of deaths globally in countries where social distancing was virtually impossible because of the structural violence of institutionalized poverty; the health of prisoners; the positive, social contribution of foreign workers living in the UK despite the Brexit-fueled vilification towards them; the fearless role of poorly paid, overwhelmingly female, care workers; the disproportionate impact of the virus on the poor; and the high death rate in the UK compared with other countries (something which the government argued they could not discuss due to differences in data collection methods, a comparison Ministers might have been happy to make if the UK had the lowest rate in Europe). However, these issues were not linked together into a coherent, critical, alternative narrative.

Additionally, broadcasters were confronted by an ideological brick wall built on constructing an inclusive consensus based on the mantra that ‘we were all in it together’. Given the evidence of the disproportionate number of deaths in relation to social class and ‘race’, as well as the dangers women faced as a result of the lockdown, the idea that the country was all in it together was clearly fallacious. Nonetheless, it did not prevent it becoming another taken-for-granted mantra, implicitly and explicitly conjuring up the wartime, blitz spirit and the Dunkirk feeling of national unity in the ‘fear-haunted world’ that the country had become.

On 8th May, Victory in Europe day – a day that saw 626 deaths – the blitz spirit appeared to be in the ascendant for a few hours as the government’s failures were lost in a cascade of bunting. However, even here there were serious questions to be asked about the links between the past, present and the future:

Britain, in the best possible way, still needs to get over the war. Were it not for the pandemic, Boris Johnson would have commandeered this holiday to elide the Britain of 1945 with that of Brexit. He would have offered a vision of renewed global greatness, with himself as the new Churchill. He may yet try. But events have made such claims immoral as well as preposterous. This is not a time for rejoicing or false pride. There is no British victory to celebrate today. Instead, there is a Britain whose state institutions were unprepared and insufficiently resilient to minimise the Covid-19 crisis. As in May 1945, the real questions facing Britain are not about the past. They are about the future.

Conclusion

The Nobel Laureate Samuel Beckett once said that we should not ‘look for meaning in the words. Listen to the silences’. In terms of this virus, and its relationship to words, written or verbalized, Beckett’s point is important. Despite the endless hours of broadcasting, and acres of print coverage, it is in the silences where the politics of this virus is being played out. Recognizing the silences, refusing to accept them and acting on them so that media coverage is taken in another, more critical direction, should be the political and moral prerogative for broadcasters and journalists. However, given what has happened at the press briefings so far, this is probably too much to hope for.

Thanks to Kym Atkinson for her intellectual and technical support with this blog.