At the end of August, Nareser Osei began to feel tired and unwell. Osei, a Labour councillor for Stratford and New Town in Newham, east London, first thought she’d been staying up too late during lockdown, watching Netflix. Perhaps, she thought, she hadn’t been getting out of the house enough.
When she noticed blood in her urine, and found herself drinking less water than normal but going to the toilet more than usual, she thought she might be pregnant – but a test was negative. A few days later she began vomiting, for hours at a time. She worked on her laptop in bed, barely able to stand or move properly. She lost her voice. She had to communicate with her concerned boyfriend over WhatsApp. Three days later, she began vomiting bile.
Her health went from “100 to zero very, very quickly”, she tells me over the phone. But for three weeks, she resisted going to hospital. In her work as a councillor, she had seen fellow black residents disproportionately affected by Covid-19, and felt it was too dangerous.
Her boyfriend, Chris, suggested she go to hospital. “I was like ‘no, I don’t want to go to hospital and catch Covid and die’,” she tells me.
“I was aware of the risks. I’m a councillor, I know ethnic minority and black people who have passed away from Covid-19, and I didn’t want to take the risk,” she says. “I also felt: ‘I can’t be that unwell, and the NHS have better things to be doing, saving people from dying of Covid-19 than me going to hospital.’”
When Osei did eventually go to A&E, she was admitted to a high dependency ward with diabetic ketoacidosis, a life-threatening condition from the type 1 diabetes she was diagnosed with after four days in hospital. If she had stayed at home ignoring her symptoms any longer, she could have died.
Osei was one of the lucky ones. Since the pandemic started in March, 31,165 more people in Britain have died in their homes than forecast. Of those thousands of “excess deaths”, just 9 per cent had Covid-19 mentioned on their death certificate.
Quietly and behind closed doors, large numbers of avoidable deaths from serious illnesses such as heart attacks, strokes and cancer are happening in people’s homes.
The number of excess deaths rose rapidly in all settings in April as the virus spread through the UK population, with the majority taking place in care homes and hospitals. As the first wave subsided, they fell again in the hardest-hit settings – and have been below the five-year average every week since the end of May. But in people’s homes, the story is the reverse. On average, 849 more people have died in their own home than would be statistically expected every week since the end of May.
In the latest week of data, which goes up to 25 September, the number of people who died in their home was 749 above the five-year average. Of those, just 11 had Covid-19 mentioned on their certificate.
Although it is not yet possible to know why the others died, there is evidence that the pandemic is preventing large numbers of people from accessing healthcare, with disastrous results.
At the height of the pandemic in April, the New Statesman discovered swathes of “missing patients” failing to present with serious symptoms. Doctors told us they feared an unfolding “disaster” of complicated cases and deaths in the years to come.
Research is now starting to suggest that the government’s central lockdown message, which told the public it was everyone’s responsibility to avoid overloading hospitals – “stay at home, protect the NHS, save lives” – worked too well.
“The messaging that went out was quite clear […] and a number of people will have taken it literally,” says Chris Gale, professor of cardiovascular medicine and honorary consultant cardiologist at the University of Leeds, who did the first research into cardiovascular mortality (heart attacks, strokes, etc) during Covid-19 in Britain for the British Heart Foundation.
His research, conducted from 2 March to 30 June, found the pandemic resulted in an inflation of acute cardiovascular deaths, nearly half of which occurred in the community. The highest excess deaths were at home, up 35 per cent on the average since 2014.
“The results supported our hypothesis that if people are staying at home – perhaps because of fear, because of messaging – something was therefore happening at home,” Gale tells me, “and it looked like they were deaths.”
“Anecdotally, speaking to patients now, people are still fearful of coming to the hospital. It’s one of the questions they ask: ‘Will I be OK in hospital, if I go in?”
GPs, too, are noticing the unusually high number of deaths at home, as people are either fearful of accessing healthcare, believe it is unavailable, fail to get treatment, or do not wish to “burden” doctors at a time of crisis.
“The data is quite dramatic,” says Martin Marshall, chair professor of the Royal College of General Practitioners. “Excess mortality was very, very high during April and early May, and whereas in hospitals and care homes it’s pretty much reversed, in the home it seems to have remained high.”
He also finds an enduring reluctance to see a doctor: “We hear a lot from our patients in general practice, partly that they don’t want to go into hospital because they’re frightened of doing so, frightened of picking up Covid or being ill in hospital, not being able to see their relatives, or partly because – in a fine, British way – they want to protect the NHS.”
Although the messaging from government has long since changed, Marshall says coaxing people back to surgeries and hospitals is an ongoing challenge.
“The last three months or so, we’ve tried to put a lot of effort into explaining the NHS is open for people who have acute health problems and it’s really important you use it,” he says. “But that’s proving a really difficult message to get across.”
NHS figures still show monthly attendances at English A&Es are far below their 2019 levels, although they are rising. In August alone, 400,000 fewer people attended A&E than had the previous year. Separate figures show that hospital admissions for cancer have also fallen dramatically; the number for June (the latest month for which data is available) was 18 per cent below the five-year average.
Dr Phil Whitaker, a GP based in Radstock, Somerset and the New Statesman’s health columnist, encountered two patients who presented for the first time with late-stage cancer within a couple of weeks in August. Both have since died, one within ten days of telling him her symptoms.
“I do think both of them would probably have presented earlier,” he tells me, “but they started feeling unwell in the midst of the first wave and thought ‘right, this is not something I’m going to bother anyone about’ at the time.”
Even more recently, Whitaker saw a patient who has been living with a serious heart condition for months, but “didn’t want to bother anybody”. She told him: “I know the health service is under massive strain.”
Whitaker also still hears from people who think “the health service isn’t there”. Recently, during a Saturday flu vaccination clinic, three people came up to him and asked if his practice was “seeing patients again”; it never closed.
“At the moment we’ve got case numbers going up and there’s lots more in the news about it again,” he says. “So I think it’s probably still a burning phenomenon.”
[see also: What I’ve learned on the front line against Long Covid]
Even paramedics report that people who have called for an ambulance are reluctant to be transported to hospital.
“In my experience, it was the elderly who were most fearful – the elderly, and parents who didn’t want to go to hospital or were making that decision on behalf of their child,” says Jon Wharnsby, a firefighter from London and the Fire Brigades Union’s northeast London secretary, who was seconded to the London Ambulance Service to aid the coronavirus response from April to July.
“There were a lot of people reluctant to go to hospital, even when the paramedics I was working with were insisting,” he says. “It was a genuine fear that hospital was maybe the worst place to be.”
Despite reassurance that hospitals had separate Covid-19 areas, people were still loathe to leave home, and from recent conversations with his former ambulance service colleagues and fellow firefighters continuing to help them, “that still seems to be case”, says Wharnsby.
Non-urgent procedures were postponed during the first wave of the virus, and there is huge backlog of patients for the NHS to contend with – the NHS Confederation estimates that waiting lists may increase by ten million by the end of the year.
Although people have always been encouraged to seek help in a medical emergency throughout the pandemic, it may be that some struggled to access healthcare when they tried, or were falsely advised to self-isolate on suspicion of having coronavirus when they were suffering from a different illness.
During the first two months of lockdown, 67 autopsies in Oxfordshire found “reduced access to healthcare systems associated with lockdown” to be a common contributory factor in deaths.
“There were a significant number of cases in which restricted access to medical care is likely to have contributed to the death,” says Professor Ian SD Roberts of the Department of Cellular Pathology at John Radcliffe Hospital in Oxford, one of the pathologists behind the study.
“These were individuals who became unwell and, in normal circumstances, would have gone to their doctor, attended A&E, been treated, but instead either didn’t approach the medical services, or they did – they rang the GP, they rang NHS 111 and were advised to isolate at home, subsequently dying several days later of a treatable condition.”
The pathologists also found a significant increase in deaths caused by drugs and alcohol, and a rise in suicides, when compared with the same period in 2018. While it is “open to speculation” whether this increase in substance misuse was a result of the social and economic turmoil caused by lockdown because the “underlying reasons weren’t overtly stated”, some of the suicides were more explicit.
“Certainly, some of the suicide deaths we had, there were suicide notes that made it very clear that the lockdown had contributed to the suicide,” says Roberts. “There were fears about financial pressures stemming from the lockdown and the stresses of Covid-19 that were stated in the suicide note as one of the reasons for the suicide.”
With a second phase of Covid-19 cases expected in winter, GPs and the NHS will need more support to stop people dying at home in this way.
“It is vital that, going forward, patients access not only emergency but also planned cardiovascular healthcare. Without the availability of these heart services we will face a dangerous, ever-increasing backlog,” says Dr Sonya Babu-Narayan, a consultant cardiologist and associate medical director at the British Heart Foundation.
Patients’ illnesses are already more severe than in previous years, as they are presenting with conditions at a later, more complicated stage. Speech and language therapists are seeing more patients who have suffered more damaging strokes because they “didn’t get in early”, according to Kamini Gadhok, chief executive of the Royal College of Speech and Language Therapists. Likewise, the complexity in patients that GPs are seeing is “up on this time last year, probably because they have been holding onto their conditions for longer”, says Martin Marshall of the Royal College of GPs.
Chris Gale, the cardiologist who researched heart attack deaths during lockdown, predicts an oncoming wave of heart failures, as people survive heart attacks and aren’t seen until a late stage: “Half the patients with heart attacks weren’t coming into hospital during the pandemic, so now you can imagine what the heart failure situation is going to be like.”
People suffering at home need a better resourced and staffed health service, clearer messaging about pharmacies, GP surgeries and hospitals being open for service, and ultimately Covid-19 kept under control over winter.
“I would urge people to make sure they do get treatments and see a doctor if they do need help,” says Osei, after her experience of nearly dying at home. “But I also get that it’s a mental thing as well. We’re constantly being told figures are going up.
“How do you tell people not to be fearful when it’s their livelihoods, friends, families, health, children at risk? We’re all going to have some element of fear. But I do think the government has a responsibility to alleviate some of that fear through constructive messaging, and ensuring that systems like test and trace do work.”
[see also: Why England was hit harder by Covid-19 than any other country in Europe]