‘I wouldn’t wish this on my worst enemy’: Long Covid is the UK’s hidden pandemic

It was January 2021 when John Cairns began to feel the symptoms we’ve grown all too familiar with. 

It was just a little tiredness at first, the way you’d feel after a bad night’s sleep, before John developed a rough, hacking cough that left him gasping for breath. Despite having worked throughout the first two waves of the pandemic as an operations manager, a test showed that John had finally succumbed to coronavirus.

‘At first, I thought it was going to be a “man-flu,”’ he tells Metro.co.uk. ‘I felt rough for a couple of days but then things just got worse.

‘My cough became really barking. I couldn’t sleep, as I couldn’t stop coughing. I couldn’t get up and down the stairs without struggling to breathe. I had to go to A&E three times, things got so bad. I just couldn’t do anything. I could only go between my bed and my sofa every single day.’

On average, it takes most people who are struck down with Covid-19 around three weeks to be fully recovered. However, in John’s case, it’s been 20 months – with his symptoms lingering long-term.

‘I never really got better,’ he says. ‘I’d say I’m only 35% my former self. Pre-Covid, I was someone who was always on the go. I was working 50 hours a week, always out having fun with my three kids. Now, nearly two years later, I’m still going to bed at 7pm because I’m absolutely wiped out.’

John is one of the two million people in the UK – 3% of the population – thought to be suffering from ‘long Covid’: when someone still experiences coronavirus symptoms for longer than the initial infection.

Little is definitely known about long Covid, with the term serving as a wider umbrella for the 200 symptoms associated with the lingering disease – ranging from brain fog and breathlessness to hair loss and a decrease in sex drive. A diagnosis is given when someone has had these symptoms persistently for over three months.

Extreme fatigue and concentration difficulties are among the most common long Covid symptoms that Dr Brian O’Connor has treated while working as a Consultant in Respiratory Medicine for the long Covid clinic at Cromwell Hospital in London.

‘It’s almost a two-pronged attack,’ he explains. ‘The inability to concentrate is something people have struggled with. It’s almost as if their brain goes to scrambled egg. Then we see the tiredness – something as simple as a half an hour Zoom meeting can leave them profoundly fatigued and needing a lot of rest.

‘Other symptoms include parosmia, a distortion of taste and smell. Foods you once found delicious can taste like vomit or poo. I’ve also seen shooting pains in the legs, unbearable skin rash. These symptoms can all be very disabling for someone.’

Dr O’Connor adds that most of the patients he sees are of working age, usually 35 or older, with more women on his roster than men.

‘The patients I have been seeing who have long Covid tend to have all been fit before they got the disease,’ he explains. ‘They’re people who are extraordinarily conscientious, juggling a lot and working incredibly hard. To suddenly have gone from such busy lives to debilitating symptoms can really affect them. They are desperately looking for something to alleviate their symptoms.’

While previous efforts have been focused on treating those suffering from coronavirus in the short term – with the disease causing over 200,000 deaths in the UK – the immediate threat of Covid-19 has mercifully dwindled. Deaths have also significantly fallen thanks to the large uptake in vaccinations and new treatments that have been rolled out.

In February, the UK government pledged £18.5 million to tackle long Covid in the community; but despite the network of 89 long Covid clinics that have been set up across the country, the huge demand of people trying to access treatment means millions are left waiting for months at a time with little result. The post-Covid data collection team found that 29% of people referred to a long Covid clinic have to wait longer than 15 weeks for an initial assessment.

As time goes by, the shortage of resources available to help has left many sufferers feel they’ve been left to cope alone on the sidelines.

Schoolgirl Lilly Winwood is just one of many people yet to have a referral about her symptoms. Having first caught Covid in October 2021, it was her second bout of the disease in February this year which has left the 12-year-old, with no previous underlying health conditions, debilitated.

‘Lilly has constant nausea, dizziness and a small tremor in her hands,’ her mother, Jennie Lowe, explains. ‘She has chronic fatigue and chest pains. On her very worst days, her whole body just aches. Long Covid has taken her old life away entirely.’

Lilly’s initial trip to the doctors went badly; after continuing to suffer with fatigue following a negative test, she was effectively told she was healthy and that she should continue with school.

‘It was the worst thing we could have done,’ Jennie says. ‘Lilly went so downhill after that. The GP pretty much told us it was all in her head, and if she just ignored the tiredness, it would go away. At the time, you trust doctors because they’re the professionals, but she was just dismissed and gaslit into thinking she was fine.’

At Jennie’s insistence, Lilly was taken for further medical appointments, and was shocked to see just how little help they received.

‘There were fears that she had a collapsed lung because of the pain and heaviness in her chest – tests showed she didn’t, but then there was no further follow-up telling us what we could do after or what the best course of action would be,’ Jennie explains. ‘I had to be really persistent, we saw so many doctors and had five or six appointments. We’ve only now found a doctor that hasn’t just dismissed Lilly, and made a referral to Birmingham Children’s Hospital for paediatrics.

‘That was five months ago, and we’re still waiting to hear. After that, she may be referred to the closest clinic to us, in Bath – but even that is a two hour drive.’

With her tiredness so extreme, and the medications being offered doing nothing to alleviate her pain, Lilly is only managing one hour of schooling a day. As she is unable to do most things for herself – such as making food or travelling even short distances – Jennie is now considering going part time to help look after her daughter, but worries about how she can support her family with less money. 

However, with Lilly yet to receive any proper referral, Jennie was rejected for further financial support through the Disabled Living Allowance (DLA).

‘Everything is a constant battle,’ says Jennie with a sigh. ‘We’re just being bounced between services.

‘I don’t think enough is being done. I feel like every NHS Trust needs to have a pathway in place so doctors know exactly what to do if a case like my daughter’s comes up. We just need something in place, because at the moment, there’s nothing. Not even basic guidance. It’s a struggle, as Lilly barely has any quality of life anymore.’

However, an assessment at a long Covid clinic does not guarantee a quick fix to the numerous and varied symptoms they may be suffering from.

A report by the Royal College of Nursing found people with long Covid face a ‘postcode lottery’ when accessing care.

Diagnosis and treatment currently vary hugely from region to region, with the RCN finding that often services offer contradictory treatment – some consider long Covid a physical condition, while others treat it a psychological condition, revealing ‘a lack of research and specialist knowledge’ of the illness.

When John finally had his appointment in Northern Ireland’s Post-Covid Syndrome Service clinic a year after he succumbed to the disease, he was left disappointed at how little support was offered to him.

‘I was assessed over Zoom,’ he explains. ‘Because I said my long term goal was to get back to work, they put me on a condition management programme. They set them up as four hours of education, four hours of occupational therapy and four hours of physio. That was it.

‘I fed back to them that this was pretty pointless. It’s almost patronising to have a condition management programme telling you about how to pace yourself, when you’ve spent the last year having to learn how to pace your energy on your own.’

‘Long Covid clinics need to take more ownership of their referrals,’ adds John. ‘They need to bring patients in and do proper tests on them. It needs to be a one-stop shop with specialist knowledge to provide proper help to these people.’

Meanwhile, some people in the UK have had no access to treatment at all. Kate Stott, who caught Covid in March 2020, has been left struggling in Scotland, which currently doesn’t have any dedicated long Covid clinics.

Kate’s symptoms have been severe. As well as having a sore throat, fever and vomiting when she initially caught coronavirus, the disease also resulted in seeing her suddenly lose movement in her arm, her joints seize up to the point where she can no longer walk, and struggling with constant breathlessness.

While Kate, 36, did not officially have an underlying health condition when she contracted Covid-19, she was being assessed by doctors for potentially having Crohn’s disease.

‘Before, I had the occasional flare up, but it was manageable,’ she explains. ‘However, after catching Covid, it felt like a nuclear button had been pressed. My body got really, really angry.

‘Because I was being investigated for Crohn’s, I have had support targeting that side of my illness. In a way, I was lucky that I was able to access care.

‘That’s when I started to see the gaps in healthcare and how Covid was woefully handled in Scotland. GPs don’t know what to do. There’s nowhere to refer people unless you have a specific problem and an urgent need to see a specialist. And even so, it could be months, if not over a year, to see somebody. Within that space of time, people can no longer work, they’re off sick, they’re losing out on their sick pay, and it’s an impossible situation.

‘I used to be a really focused career-driven woman with a busy family life. But now my abilities as a person are completely debilitated. I’ve had to close my business. I choose whether I have a shower in the morning or make the kids dinner at night, because I can’t do both anymore.

‘I sometimes struggle to get my head around it; I went to bed one night in March 2020 with a sore throat and now I sometimes have to use a wheelchair. I wouldn’t wish this on my worst enemy.’

The lack of support from official channels has seen people desperately turning to alternative therapies to try and ease their ongoing symptoms.

‘There are people who claim that antihistamines have helped them,’ Dr Brian O’Connor says.  ‘We’ve also had patients have hyperbaric oxygen treatment, which is very expensive – particularly as the demand has risen for it. We don’t know whether this works, but it doesn’t do any harm to patients to try it.’

People with long Covid feel abandoned.

Dr O’Connor’s fears are for long Covid sufferers to pay extortionate sums of money for treatments that are performed by under qualified people, leading to them having done more harm to themselves.

‘Plasma apheresis, where patients have microclots removed from their blood and then have their blood returned to them, has gained popularity abroad,’ he says. ‘We don’t know if this has any true utility. We do know a number of patients think it’s wonderful –  but it costs a lot of money and in the wrong hands, it can be full of issues.’

Of course, as the UK grapples with the ongoing cost of living crisis, turning to private healthcare or other experimental treatments just simply isn’t an option for people like Jennie and Lilly.

Instead, they have found support from online communities, who provide advice and resources collated from their members.

Ondine Sherwood is one of the founding members of Long Covid SOS, with the group starting in the spring of 2020 after many people who contracted Covid noticed their symptoms were not going away when talking in an online Covid forum.

‘We felt abandoned,’ she says. ‘We decided to try and lobby parliament for change and support for those with long Covid.’

Long Covid SOS made a short video about their experiences with the disease that went viral, attracting the attention of WHO and NHS England. The group now has a regular dialogue with Steven Powis, the Medical Director of NHS England, about treatments and the best course of action when tackling long Covid.

‘But our influence only goes so far,’ Ondine says. ‘The NHS is so stretched as it is, there’s little they can do when it comes to funding.

‘There’s also so many discrepancies in how people are treating long Covid. We just have anecdotal evidence to go on so far, but some people feel not enough is being done.

‘We have people forced to wait a long time before they’re seen in a long Covid clinic, and then they’re left disappointed because they can’t really be offered anything – the NHS doesn’t offer experimental treatment.

‘This is why funding clinical trials are so important, so people can then receive effective treatment for their symptoms.’

At the moment, Ondine is keen to educate others on what long Covid is so people are aware of how debilitating it can be for some sufferers.

‘Long Covid was barely mentioned in any of the government updates,’ she says. ‘There’s things we could do that could be keeping us safe, that we’re no longer doing.

‘I know NHS England are working on educational materials and we are planning to be running more educational videos to help with understanding how to understand changes to your body when you’ve got long Covid.’

Unfortunately, for Ondine, there’s a general feeling that people are longing to be ‘done’ with Covid – after the government proclaimed ‘freedom day’ in July last year, where restrictions were rolled back, few people have kept up wearing masks in public spaces, and those using hand sanitizers while out and about were few and far between.

Outgoing Prime Minister Boris Johnson has been bullish about not introducing any more restrictive measures, even when Covid has been rife – with Ondine believing political gain has taken priority over public health.

‘This whole issue has been politicised,’ she says. ‘So few people are testing now they are no longer free, and mask wearing is rare. I think it’s really irresponsible. There are so many people at risk of having their lives wrecked.

‘It’s not that we want a lockdown again – there are just things we can do to keep ourselves safe, such as wearing masks in crowded spaces and improved ventilation in schools just so people aren’t at risk.’

Whatever the next moves are, it’s clear coronavirus, and the potential long Covid that comes with it, isn’t going away anytime soon. It was reported that in June, around 1 in 17 people in England has coronavirus – and with between 3 to 12% of all people contracting Covid-19 potentially going on to develop symptoms that can last more than three months, we may see more people with long Covid over the coming years.

It’s a problem that could leave a sizeable hole in the economy if left untreated; a new Institute for Public Policy Research (IPPR) report warns that 40000 people have been forced to leave the workforce since the pandemic hit due to health factors including long Covid – resulting in an £8 billion economic downturn.

However, it’s seeing so many people having their lives suddenly and irrevocably changed that has made Ondine passionate to keep advocating for those wiped out by long Covid.

‘We need more research and data to establish which treatments work, but at the moment, these things are out the reach of the vast majority’s people with long Covid,’ she says. ‘We need treatments that are affordable and that are subsidised and paid for. Otherwise we’re left with these blighted lives.’

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