Covid’s crappiest for those most at risk

Its merciless, this disease. Worse still, it's discriminatory, exposing existing fault-lines across society.

Covid’s crap, isn’t it?

That’s got to be the understatement of the century. And we’re only a fifth of the way through. A fifth of the way through the century, that is. I do hope we’ve got less than four fifths of the pandemic to see through.

By the time those alive at the turn of the 20th century lived to see 1920, if they lived that long, they’d quite possibly experienced the worst events of the 20th century. The Great War, Spanish Flu: untold misery.

Perhaps we’re living through the grimmest events of the 21st century. Few of us adult enough to reflect on this question will live to 2099. There’s no definitive answer to this question and many of us won’t live for long enough to form a judgement – all we can do is speculate.

But for the tens of millions infected with Covid-19, for the hundreds of thousands who have died of the virus, and for the millions of bereaved families, judgements about how utterly awful this period is can be formed easily enough. We’re through with this. There’s an incalculable impact: to our health, to our relationships, to our financial security and to our sense of confidence that the world is becoming a better place.

This has gone on for too long. In our twitter-twitchy era, many of us expected solutions the moment the WHO confirmed there was a global outbreak in March. We’re all reeling to various degrees. If the virus was ever novel, or if there was a time I can be honest enough now to admit was once intriguing or even exciting, then those days have passed.

Its merciless, this disease. Worse still, it’s discriminatory, exposing existing fault-lines across society. Especially in terms of which demographic groups found themselves most vulnerable to experiencing severe illness and dying from Covid in the early stages of the pandemic.

I cry a baby’s cry: when will this all be over? We’ve had enough. I’ve had enough.

I’m not bleating, nor is anyone else who rails at what 2020 has served up. I’m simply human. But of course I understand many, many people are worse off. I’m exceptionally lucky in fact.

Covid Voices

Many people worse off than me are living with long-term conditions that make them especially susceptible to the virus. In the UK, millions had to ‘shield’ for an extraordinarily long period, effectively forcing them to remain housebound from March to August. The information and support they received from central government was negligible.

A fantastic programme – Our Covid Voices – was set up by health and care coalition, National Voices, to provide a platform for dozens of people most at risk during the pandemic.

I contributed my story of information overload in the first phase of the pandemic.

One of the things I heard as a consistent concern during the confinement period was the extent to which people who were shielding felt like a forgotten part of the population.

True, some of them received irregular food parcels, but many others didn’t. What they nearly all needed was the certainty a pandemic simply can’t offer. People with cancer and conditions ranging from Multiple Sclerosis to Chronic Kidney Disease, lupus, Crohn’s Disease and dementia needed to know when it would be safe enough to leave the house. They needed the certainty that people at lower risk of severe illness with Covid would take their responsibilities seriously enough so as to minimise their own risk of catching it, and thus, minimise the risk of passing it on.

I also heard how people were concerned about being forced, or feeling forced, back to the office when they can credibly fulfil their job responsibilities from home.

Livelihoods and health trade-offs

I worry too many policy choices are being presented as trade-offs’ when we can look to both resuscitate our economy and save lives.

No one should feel forced to return to their office. Trade unions and business groups need to hammer out sensible deals.

I understand the risks to our city and town centres. It’s in no way trivial to point to our empty cities and question what economic costs will ensue from seeing so few people commuting to work. There will be costs to hospitality and we mustn’t trivialise business groups’ concerns. Our town centres are precious, but we mustn’t view their future as somehow independent from the people who give them their vibrancy. Like our high streets, commuters and key workers need protecting.

Urban planners and demographers fear cities like London might yet turn into the UK’s very own Detroit: hollowed out, with sterile suburban rings.

Government needs to be bold and imaginative

Those prophesying London’s demise are no doubt premature in sounding the alarm, but we do need to work harder to find imaginative solutions. London has exceptional amounts of urban space dedicated to high density office space and much of this it seems to me will need to be re-purposed in the decade ahead. Why not see some of this space used to permanently house rough sleepers? It’s easy to imagine bold solutions when we try.

Governments get a lot of stick right now and I’m not alone in raging against the current UK Government for its lack of resolve. It’s hard to govern in a crisis like this. The reality is that there are few easy solutions to come by in a pandemic. But an imaginative (and empathetic) Chancellor would exempt the approx. 1m people who were shielding and are of working age from punitive and unjust requirements to work in offices. Further, the Chancellor and the Secretary of State for Work and Pensions should exempt people who were shielding and who remain highly vulnerable to Covid from the welfare-to-work regime.

Dreamt up by previous governments, under this current administration ‘welfare-to-work’ requires unemployed people claiming benefits to repeatedly turn up at the Job Centre for soul-destroying interviews – and if they don’t, they’re sanctioned.  We simply can’t play with people’s health and mental wellbeing like this.

Healthcare in a period of ongoing crisis

It’d be nice to think additional capacity created at the start of the pandemic in the form of new Nightingale hospitals, will be “locked into” the health and care system. I’ve heard certain hospital trusts like the Royal Marsden have set themselves up as “Covid-free” zones so people with other healthcare conditions like cancer can still go ahead and be treated.

That’s a good start and hospital trusts are to be commended, but recent experiences involving my Dad, who needed treatment at Moorfields, suggest there’s still some way to go before all hospitals address historic backlogs.

Perhaps more significant still, the NHS and care services need to become even more personalised in an environment where patients have increasingly diverse and specific needs. Dad needed cataract surgery after his operation had been postponed at the beginning of lockdown. To access surgery, he needed a Covid test ruling out a positive result. The hospital kept on stubbornly advising him to undertake his own test at home. But the point is he couldn’t self-administer tests in the way they were advising – at least not safely or reliably enough to produce a meaningful result. He’s been living with partial sight and his eyesight had been made worse by his cataracts. It was a bit of an administrative howler on their part.

Only after lots of emails flying back and forth, and me supporting him as his carer, did they relent and agree to operate on him using the protocols of treating a patient as if they were positive for Covid-19. All healthcare services are going to need this kind of common sense flexibility in the months and years ahead.

The forgotten C

One significant trend we must halt is the increased numbers of people experiencing a delay to a cancer diagnosis. Apparently many people with symptoms of cancer have put off seeing a doctor and this has exacerbated an already historic challenge that too few people in the UK present early enough to seek the care that treats – and beats – cancer.

I support my old employers’ campaign – ‘The Forgotten C’ – to prevent Cancer from becoming the forgotten condition in this ongoing healthcare crisis. Do please check it out. One of Macmillan Cancer Support’s main demands is that all those shielding or at end of life with cancer get the intensive and specialised support they need. Another demand is that treatment recovery plans need to be produced by each of the four governments of the UK.

The ‘longers’

I know of at least one friend who had Covid, thought they’d recovered somewhat, then developed complications and now feel unclear why months later they’re experiencing breathlessness. Scarring on their lungs is just one potential cause being investigated by doctors.

We must acknowledge the needs of people with long-term complications arising from Covid. We mustn’t view the support we give to people in narrow, binary terms, i.e. that people either need urgent healthcare, or they can self-isolate and don’t need secondary healthcare.

There’s at least a third group whose needs demand attention, and that’s the so-called ‘longers’, people experiencing hitherto unexplained or poorly understood long-term consequences from having caught Covid.

And then let’s not forget those experiencing other long-term social and economic impacts – the people whose relationships became abusive in lockdown and now need social support. Nor must we forget the health and care workers who witnessed terrible choices being made in the early stages of the pandemic. I’ve heard it said some experienced a form of ‘moral injury’ as they participated in acts harshly rationing public healthcare that ran counter to their sense of self or their personal values. Ventilators were in short supply and unimaginable choices had to be made about which patients would be prioritised for help.

And there’s the people who’ve lost lifelong occupations now experiencing a profound loss of identity, with all the risks that presents to their mental health.

We could class them all as ‘longers’, if you like. Their ordeal isn’t over.

For them, Covid isn’t just “crap”. It’s life changing.

And yet there’s something unreal to where we find ourselves

A few days ago I arrived in Paris to be with my middle sister and nephew.

London was subdued and only making a tentative return to business.

If not booming, Paris is at least purposeful as the annual rentrée sees vacationers return to work and pupils return to school. Streets have been narrowed to road traffic with pavement spaces widened to allow cafes and restaurants to serve more customers outside. Cycle paths set up during the confinement period have been made permanent in areas like the 18ème arrondissement. Life is carrying on, not as normal, but with large crowds still assembling.

Perhaps the decision last week to mandate masks outdoors has given people here a false sense of security. Yesterday, picking my nephew up from his first day back at school, I was astonished how few parents decided to practise physical distancing as they all crowded in waving frantically for little Elise or Matthieu to come and meet them.

I always feel rather ambivalent about Paris. It’s a city that chokes on its own cynicism and folds in on itself like an origami model. The streets are narrow, the houses slope, and much of its charm works on me only when I’m in my very best of moods.

Paris skyscape from Georges Pompidou

There’s something quite unreal to seeing so many people smoking their menthol cigarettes and sipping their bières blanches outside on the streets. Queues snake around laboratoires, where people must present their insurance to get a blood test. But people queue only centimetres apart. Isn’t there a pandemic on?

Many people – quite understandably – don’t want to face all that’s crap about Covid. I plead guilty. I’m often one of them!

But the big downside is that leaves those most at risk of the worst outcomes facing the crappiest times of all.