While death and disease dominated the headlines in the UK for most of 2020, we’re not as good at considering our own demise. Perhaps the potent blend of death tolls in the headlines and our intrinsic fear of death blunted the nation’s ability to scrutinise exactly what these totals actually meant.
The UK’s emergency legislation in response to Covid-19 radically changed how deaths were registered. If the Imperial modelling that predicted 500,000 deaths came to pass, it would be essential to fast-track the registering and disposal of bodies. The UK did not want an Italy or Ecuador situation with bodies piling up. But this came with costs: at a time when it is crucial to understand why people are dying, we have less clarity due to the changes in registration and recording.
‘Unprecedented’ is a word that has been horribly over-used during the epidemic, but it should not equal ‘unplanned’. Ministers claimed not to have read the 2016 Exercise Cygnus pandemic planning report. Before Cygnus there was 2007’s Exercise Winter Willow, as well as detailed debriefs of SARS, MERS, H1N1 and even Ebola. Plans should have been robust and flexible, but the NHS and Public Health England were ill-prepared in terms of surge capacity and PPE stocks.
‘Unprecedented’ is no excuse when pandemics are the basic bread and butter of disaster planning. Lucy Easthope, disaster planner, has a special interest in preemptive pandemic and recovery planning. She is the visible representation of the depth and detail of the UK’s disaster preparation and puts the lie to the so-called lack of planning. She said, ‘The media and the government have sold the idea that no one could have expected this, but a pandemic is the most likely national risk, and very well prepared for in the Home Office and the Cabinet.’
Easthope is involved in planning for excess death and told me, ‘For every Covid death we would estimate another four deaths over two to five years, and that is how we plan body storage. You see extra deaths for domestic violence and obstetrics, delayed or missed oncology diagnosis, no admission to A&E, sepsis and suicide.’
I was surprised by Easthope’s foreknowledge of non-Covid excess deaths and asked if it’s seen as inevitable: ‘The disruption that a pandemic causes means that people who would have died over the next five years will be brought forward. This has been made worse by a vigorous and long lockdown.’ So, should we have locked down? She was cautious, and said, ‘The virus is nasty and it must be respected. Some social changes would be essential, but otherwise I would advocate business as usual. The idea that essential civil function and hospitals would shut is incredible. In a pandemic you plan to keep as much open as possible.’
Although lockdowns seem to be accepted by the government officials, the media, and therefore the wider public as orthodoxy, the shocking truth is that they are not orthodox. They were specifically not recommended in the UK or the WHO’s pandemic plans prior to 2020. There is more on this in the essay ‘Lockdowns don’t work’ in Appendix 2.
I spoke to a coroner (who did not wish to be named) who confirmed that the UK quickly increased mortuary capacity. They thought the lockdown and changes to death registrations were necessary when knowledge was scant and the system was threatened by having to house and process 500,000 bodies. As it turned out ‘the epidemic was essentially the sort of pressure we get over a normal winter. It was way less than what we had planned for.’
The anonymous special scientific advisor also told me they warned at SPAD and senior civil service level that there would be severe consequences for excess deaths if the country locked down. ‘Lockdown was not the way to go,’ they said. ‘Bluntly, you should try and power through an epidemic. Lockdown was obviously going to tank the economy. We have never trained for a lockdown like this. You don’t do it for a coronavirus. I’ve been through all my papers. It’s just not something we do.’
Except we did. The difficulty now is that although death totals are confidently asserted, the relaxation of the death registration in order to cope with the worst case scenario means we don’t really know how many people have died of Covid.
Where once a doctor had to have seen the deceased within 14 days of death to sign off a death certificate, now it is 28 days, although according to the coroner both are arbitrary numbers. And in a time of social distancing, what does ‘seeing’ actually mean? It might be a Zoom appointment or telephone call. The coroner told me an apocryphal story about a family holding a dead body up to a window so the doctor had ‘seen’ the body. He wasn’t entirely sure whether the story was a joke or not.
Also, if the deceased’s doctor is not available, then any doctor can issue the death certificate. The doctor need not see the body, but can speak to people who have seen the deceased and use the medical notes. Remote verification of the body is even possible by someone who is not a medical professional,1 although they should usually be independent of family members. The coroner told me that in his view ‘it was entirely the right decision to make based on the information we had and would work if backed by a functioning Medical Examiner system.’
The problem is the UK does not have a functioning Medical Examiner system. It was being rolled out in England and Wales to add a safeguarding scrutiny to non-coronial deaths and improve the quality of death certification. A second, more senior doctor should agree the proposed cause of death. This would mean some arbitrary rules like 28 days or 14 days since seeing the deceased could be relaxed, and it should also safeguard against another Harold Shipman. The implementation varies across different hospital trusts, there is no software yet to manage it nationwide, and the senior doctors who should act as Medical Examiners were called to frontline work during the epidemic. Worryingly, according to the coroner, ‘At the moment we are not set up to prevent another Harold Shipman.’
The anonymous scientific advisor was frank about the result: ‘We have no idea how many people died because of this disease, or poor clinical decision-making in the early days, or neglect in care homes.’
Easthope told me that ‘death scientists noted immediately that the Coronavirus Act had been framed to take away all the problems we found in exercises like Cygnus, but by doing that also stripped a load of safeguards and protections for the dead and for death data. We have a crisis in death recording. For the first time in 50 years of slowly improving death registration we’ve lost our ability to differentiate the cause of death. It surprised me that the “no confirmatory death certificate’” was in the Coronavirus Act. I think that should only have been enacted at a certain threshold. In other plans that we’d done, the idea that death scrutiny would be one of the first sacrifices was an anathema.’
24,7092 deaths occurred in care homes in England and Wales in 2020 and up till 22 January 2021, nearly a quarter of the total Covid deaths, and approximately another 4,8103 care home residents died with Covid after being transferred to hospital up to 20 June 2020. Another 1,419 have died in hospices. It’s hard to see how deaths in hospices can be attributed to Covid, and there is uncertainty about some care home ‘Covid deaths’ actually being due to Covid.
I spoke to a care home worker in the north of England confidentially to discuss this problem. They had cases where Covid had been inaccurately put on the death certificate as the cause of death or an underlying cause of death. One resident, well into her 80s, tested positive for Covid at the end of March 2020, when she had mild symptoms. She recovered, but went on to die in August. A covering doctor who had never met the resident, or seen the body, insisted that Covid must have been a cause of death. The care home worker told me ‘she actually died of old age, quite peacefully and contentedly. Old age isn’t supposed to be used on death certificates, but sometimes it’s what it is. There wasn’t really anything wrong with her, people do wear out. That’s why people come here. Before, old age would go on death certificates occasionally if there were no other underlying issues, but it would not go on a death certificate now.’
How many times did this happen in care homes across the country? There is an abundance of anecdotal stories on social media from families or c
are home workers who say Covid has been incorrectly put as a cause of death on the certificate.
The coroner had a similar story. They were called by a doctor they know personally, asking for advice about ‘an old boy who’d had multiple kidney infections and died eight hours later in hospital.’ Against her better judgement, the doctor agreed to do a Covid swab, although she knew he’d died because of his kidneys. It was positive and she had to put Covid on the death certificate. I asked the coroner if they think this will be a common tale. ‘We have no idea,’ they retorted.
There are a number of dangers. The Covid death total is probably inflated, because Covid has been used too liberally on death certificates. Early on, when testing was not routine, it would have been an easy mistake due to the uncertainty around symptoms common to Covid and also other coronaviruses, flu and respiratory diseases. But even a positive test doesn’t mean Covid was truly influential in death. Many residents in care homes did not see doctors for months, testing was not routine, and families were largely unable to visit and check on their relatives’ health or be able to form an opinion about their condition in the lead up to death. As all of my interviewees said, we have no idea how often it has happened, and now we never will. If, in the most horrible of circumstances, a resident was neglected or suffered some grave misfortune, it could be passed off as Covid. Before 2020, a care home or hospital might have been sued for poor treatment or negligence. That is much harder without the same oversight and with minimal forensics.
Lockdown itself caused a horrifying number of excess deaths, just as Easthope warned. A SAGE report4 predicted that the overall death toll would be 222,000, but over 100,000 deaths would be non-Covid deaths caused by lockdown and other impacts. There were nearly 30,0005 excess non-Covid deaths at home between 21 March 2020 and 15 January 2021, and 2,937 in care homes. These might be due to delays in treatment or a reluctance to seek treatment, or ‘missed’ Covid deaths, or other causes like suicide. Non-Covid deaths in private homes, and deaths from conditions which can quickly become fatal if not treated in time, are well above the five-year average. You could say there was an ‘epidemic’ of people needlessly dying at home because they were reluctant, or unable, to seek medical help.
Frontline mental health professionals were concerned about the impact of lockdown. Suicide is the biggest killer of young people in the UK.6 Some children were on lengthy waiting lists for mental health treatment in 2020. Ged Flynn, CEO of suicide charity Papyrus, said, ‘This is scandalous. Saving young lives is no longer a national priority and we must change that.’ While suicide must never be attributed to a single cause, nine out of 10 calls to Papyrus during the first lockdown reflected the impact of Covid and lockdown, with many concerned about a loss of income, reduction in service provision, domestic violence and abuse, and the potential to become infected with Covid-19. Ged warned of the ‘longer-term problem of emotional distress’ for young people as the impact of lockdown continues and mental health services are stretched.
A report Suicide in England since the COVID-19 pandemic – early figures from real-time surveillance7 claimed that suicide had not increased in the first lockdown. I was surprised and asked Easthope why suicide had not increased, because I thought the isolation and impact on income would have been detrimental to people already struggling with mental health. She responded by telling me that disaster literature says that suicides only tend to increase from six to nine months into a disaster. The first months don’t normally reveal it. She also urged caution about early reports as only a coronial inquest can determine suicide.
The report Traumatic Stress and Suicide After Disasters8 details the phases after a disaster and, while you would not expect to see increased suicides or ideation in the immediate ‘impact’, ‘heroic’ and ‘honeymoon’ phases, they could come later during ‘disillusionment’ and ‘reconstruction’. This is a long-running disaster, so the ‘impact’ point for one person might be the beginning of lockdown, for another it might be a few months later when they lost a relative they couldn’t say goodbye to, or for yet another it might be when they lose their job when furlough ends.
Lockdown is a new experiment in response to an epidemic, Covid is a new disease, and fear has been leveraged in new ways. The impact of lockdown will be felt in economic and social ripples for many years. Of course people want to believe that lockdown hasn’t caused an increase in suicide. No one wants to see suicides increase, that would be horrific, and this pressure is probably felt even more acutely by the policymakers and those around them.
A generous interpretation of Suicide in England since the COVID-19 pandemic – early figures from real-time surveillance would be that it sought to evaluate the most disturbing impact of lockdown too early. A cynical interpretation would be that it was conducted early to placate people, before the impact on suicide could be known.
saidEasthope also told me that she worried that ‘we’ve done something incredibly traumatising to the families that is potentially bigger than the bereavement itself. In any disaster you should still allow people to see the dead. It is a gross inhumanity of bad planning that people couldn’t visit the sick, view the deceased’s bodies, or attend funerals. Had we had a more liberal PPE stockpile we could have done this. PPE is about accessing your loved ones and dead ones, it is not just about medical professionals.’ She said previous plans had flooded resources into death registration and management, not taken them away. It was recognised that overwhelm was an issue, but just removing the safeguards should not have been the answer. ‘This is the sort of thing that I had expected us to be doing in January and February,’ she said, ‘but a sort of paralysis set in.’
Good planning was cast aside. We were not equipped to process the Covid dead, and we’ll never be able to properly count them. In decades to come, when the inevitable reports and studies into the Covid dead are published, they will be littered with asterisks and freighted with footnotes. Or worse, taken dangerously at face value.
Beyond counting the dead, how do we count the cost to ourselves socially? Dying alone in a hospice, last rites delivered in full PPE, no family beside the bed. People unable to visit elderly relatives in care homes for months. Funerals limited to 10 people. The young calling suicide helplines, bewildered and traumatised. The uncertainty over cause of deaths, the lack of closure. How do you count the cost of dying alone at home, too scared to go to hospital, or without holding someone’s hand? For this, we need the ultimate inquest and then the birth of better ways to count the dead.
ROSIE, 13, BY HER MOTHER
We were really scared with all the images we’d seen in the media. We put ourselves in isolation a week before lockdown because the kids had coughs. When we officially went into lockdown on the 23 March we stuck to the rules. We stayed inside 100% for a good three months, except for a dog walk once a day.
We got to the stage where it was obvious my 13-year-old daughter, Rosie, was scared to go out. So at that stage, even though it wasn’t technically allowed, we thought we had to start encouraging her to go out with her friends.
When you are 13 the world should open up to you. It’s really sad to think of teenagers having so many restrictions placed on them. I worry it will stunt their emotional growth.
She has to use hand sanitiser before each lesson at school and her hands hurt. She has been sent out of class for coughing, but she coughed because of the sanitiser fumes in the air. They have a mask monitor who screams at them if they don’t have their masks on. Our daughter complains about the constant eyes on her and telling her what to do. It’s a tyranny over them.
My daughter started having panic attacks. They happen more often at school, and I think that’s because of the rules and restrictions. I have to pick her up from school if it happens. The first time, I genuinely thought something was seriously wrong with her. Her body went into overdrive.
She feels dizzy and weak when she has one. She feels like her neck can’t hold the weight of her head and has shooting pain
s in her head. After the huge rush of adrenalin she starts to shake. She couldn’t walk after the first one.
When she had the first one, apparently the teacher wouldn’t come near her. I couldn’t believe a teacher wouldn’t stop her falling, or help her, because she was so scared of touching another human.
Some of her friends are experiencing anxiety in their own ways too. It’s made me think about how young girls are going to cope. Hysteria and feelings do pass especially between young girls.
She is on a waiting list for a counsellor at the school who probably won’t be available till January. It feels like we don’t have anywhere to go. We feel cut off from the world. I feel angry. It’s where we are headed as a society that worries me.
We don’t make our daughter stick to the rules anymore, She has enough to deal with in school with these measures. She needs normality at the weekend, so we let her see friends and family. Grandparents hug her. We won’t have people tell us we can’t hug.
12. THE ILLUSION OF CONTROL
During the epidemic we were told repeatedly that mass gatherings and the loosening of lockdown screws would result in more Covid cases, more deaths, a surge, another wave, a tsunami, a worst-case scenario. Disaster was always around the corner, or in ‘two weeks’. By the time we were around the corner, or the fortnight had elapsed, we were onto the next crisis.
Here are nine times that the doom-mongering modellers and the pessimistic politicians and pundits told the people of the UK that they would cause disaster and death during 2020.
8 MAY – VE DAY
Despite being urged to stay at home, people held socially-distant street gatherings for VE Day, braving the UK media’s disapprobation. Villagers in Grappenhall were described as ‘breathtakingly stupid’ for performing a socially-distanced conga holding a rope marked at two-metre intervals. A local journalist commented that ‘the best thing the Grappenhall conga line could have done was to keep on dancing all the way down Knutsford Road to Warrington Hospital’. Yet they must have found their way home, as there were no Covid deaths in the local hospital over the next several weeks.
A State of Fear: How the UK government weaponised fear during the Covid-19 pandemic Page 18