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

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.’

‘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.’

‘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.

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.