Long Haulers: People suffering the debilitating effects of long Covid say they feel abandoned

“You waken up from a bad night’s sleep and feel totally slow – that’s your baseline. You just don’t perk up.”

Long Covid has cursed my 25-year-old nephew Oscar Hazelwood for nearly three years. The choice of word is deliberate: it hit him like a hex. Oscar got Covid-19 in early March 2022, during the final year of his archaeology degree at Glasgow University, and was left with crushing exhaustion, brain fog and digestive problems which have plagued him ever since.

When we meet, at lunchtime on a Thursday, he is wrapped in a dressing gown looking bleary-eyed after waking from another long but unsatisfactory night’s sleep. 

“I don’t think I appreciated the difference between fatigue and tiredness before,” he says. “I could sleep four, eight or 10 hours and I would probably still feel the same when I woke up. You want to sleep, but sleeping doesn’t really impact the symptoms.” 

Oscar had to do his finals in the full throes of the illness. He had been one of the department’s star students, but studying and writing – even thinking – had become much harder. Finishing his dissertation felt to him like climbing Ben Nevis in a diving suit. “Even small things totally wipe you out,” he explains. “At uni, I was living on the third floor. If I went downstairs and across the road to Lidl and back, I would have to go to bed.”

He has since experienced peaks and troughs – a day or two when he can do things, then days when he struggles to hold a conversation. 

Oscar got a job at an archaeology lab after university but had to give it up and is now back at the family home in Edinburgh. 

It was frankly the last thing he wanted. “I love this home, but I don’t want to be here,” he says. “I want to be out, standing on my own two feet. I feel my peers are out there, progressing in their careers, and I’m stagnating and there’s nothing I can really do about it.”

In spite of everything, he still hasn’t had a definitive diagnosis of long Covid, an experience that is not unusual. Doctors describe his condition as fatigue, thought to be related to Covid, even though he has proof of a positive Covid-19 test and is experiencing common long Covid symptoms. 

“That’s one of the things that frustrates me most,” says Oscar. “There’s no recognition of what I’m dealing with. 

“It’s five years that this illness has been around and that’s a very long time for people to be struggling along without it being acknowledged.”

In fact, he has had very limited medical care from the NHS. 

It is thought that there are around 187,000 people in Scotland living with long Covid. All health boards are meant to provide a long Covid clinical pathway, with GPs the first point of contact. 

Oscar Hazelwood is one of those struggling to access support | Picture: supplied

Public health minister Jenni Minto told Holyrood that “Scotland’s NHS boards have well-established referral pathways to a range of services for those with long Covid symptoms”.
But patients with long Covid tell a rather different story. According to the charity Long Covid Scotland (LCS), “most people with long Covid cannot access primary or secondary care investigations and treatment”, with “massive variation in long Covid services across Scotland”.

A Holyrood Committee inquiry that reported in April 2023 found that “almost all individual respondents to the call for views spoke of a lack of awareness among medical professionals, GPs in particular, in terms of assessing patients, diagnosing long Covid and providing treatment options.”

That is Oscar’s experience. There is one GP at his practice who is working with him to try new approaches, but he’s been unimpressed overall. 

“The frustrating thing is that I go to the doctors’ surgery knowing more about long Covid than they do,” says Oscar. “It shouldn’t be up to the person who struggles for words mid-sentence to do the research. I feel GPs should have a basic understanding of long Covid, but in my experience most don’t have a clue. I like the GP who I see now, but I feel under-supported in general.

“I have a friend who gets support from a doctor in Surrey because that’s the only person who will help them.

“A lot of us have given up hope of getting support and we’re having to figure out the way forward for ourselves.” 

The Holyrood committee also highlighted the unwarranted scepticism of some medical professionals, saying: “A common phrase used by respondents to the call for views was they felt they were being ‘gaslighted’ by the medical profession.” It highlighted multiple reports of people only getting treatment that helped them after going to private GPs.

The lack of recognition is not just from medics. When Oscar was assessed by the Department for Work and Pensions (DWP) – an online process – they decided he had no limited capability to work.

Discussing this, my even-tempered nephew shows a rare flash of real anger. “I got zero points on their scoring from someone who’s never even met me,” he explains. “That’s a real kick in the teeth to someone like me.”

Scepticism about long Covid and not being believed is a widely reported problem. Oscar took the DWP to tribunal last month and the judge swiftly overturned its judgment. He is now classed as limited in his capability to work.

He says: “The whole process just felt like such a waste of everyone’s time and energy. It’s hard when the system you rely on for support seems to be designed to find a reason not to help.”
The impact on the economy of long Covid is thought to be seismic. The Institute for Fiscal Studies says that, UK-wide, workers lose £1.5bn of earnings a month because of the disease. 
That’s a pressing concern for government, but a far greater anguish for those affected. Oscar says: “I don’t want to be taking benefits; I want to be working.” Having had to fight for a diagnosis, support and even just to be taken seriously, he feels abandoned.

Grief. That is the word Stuart McIver uses to summarise the experience of people with long Covid. The 48-year-old civil servant and LCS campaigner lost his father as a child and his mother when he was 28 and says the grief he has experienced after being disabled by long Covid is as bad. “People are grieving for themselves and for what their future holds,” he says.

He first got Covid in March 2020 and seemed to recover quickly but just over a month later, he got up one day and found he couldn’t breathe.

A GP told him to call a taxi and go straight to hospital. In the car, Stuart phoned his wife, who was at work, fearing that he would never see her again.

After 10 hours in A&E, during which time his breathing settled somewhat, he was sent home, but it was only the beginning. 

The symptoms of breathing problems, exhaustion, brain fog, diarrhoea and nausea persisted. “It was awful,” he says. “I was losing the ability to read, I couldn’t talk, couldn’t think. I couldn’t even do Zoom calls with my family.” When he lay down, his breathing worsened so he struggled to sleep.

On another occasion he spent 13 hours on a plastic chair in A&E due to chest pains.
Stuart is now also prone to intermittent fainting spells. “I just stay in the house usually,” he says. “I get confused crossing the road and take a stick in case I get dizzy. It’s consumed my life in every way possible.”

He has attempted phased returns to work five times but each time his symptoms have caused him to “crash” with exhaustion and his health has worsened. He is now on a career break.
“It’s devastating how your life changes and even though I know I shouldn’t, I still fight it sometimes. You’re brought up to think, you’ve got the flu? Keep going,” he reflects. “The variability, not knowing how you’re going to be from one day to the next, is astonishing.”
Stuart, Oscar and many other long Covid patients share a sense of frustration, disbelief and at times despair at how poorly supported they are. 

Long Covid patients do breathing training with a physiotherapist at a rehabilitation clinic in Germany | Alamy

There are children bedbound with long Covid but the group Long Covid Kids told the Scottish Covid Inquiry in November 2023 that their children have been “dismissed and ignored” by the Scottish Government.

The number of people with long Covid in Scotland is growing as people continue to contract Covid-19. Campaigners feel the Scottish Government is behaving as if Covid is “over”, failing to raise public awareness of the risk. 

The Scottish Government allocated £10m for long Covid in September 2021, for three years, but as some health boards had trouble recruiting staff, it was stretched over five years, with the remainder due to be allocated this financial year and next. 

Minto says it is being used “to support NHS boards to increase the capacity of existing services, develop these into more clearly defined local pathways and provide a more co-ordinated experience”.

In December, finance secretary Shona Robison announced £4.5m additional funding for new specialist support covering long Covid, ME, chronic fatigue and similar conditions.
If the budget is passed, it should start being allocated next year in discussion with NHS boards to suit local models of care.

McIver says the money is a step in the right direction, but far from enough. He fears that without a “solid plan” it will leave the same unresolved problems.

He says: “The previous £10m long Covid fund failed to deliver – promised care coordinators were never put in place and recommendations from Holyrood’s long Covid inquiry were not addressed.

“The lack of transparency about how past mistakes will be addressed raises serious questions about whether this new funding will actually make a difference for those affected by long Covid, ME, and chronic fatigue.

“There’s still no public health messaging, and people are disengaging from what services exist because they simply don’t meet their needs. If this funding is to have a real impact, it must be increased and accompanied by a clear plan to tackle the current systemic flaws in care, ensuring everyone receives equitable medical treatment.”

Scottish Lib Dem leader Alex Cole-Hamilton and Scottish Labour health spokesperson Jackie Baillie have both championed people with long Covid. Cole-Hamilton says: “Long Covid may be the biggest mass-disabling event since World War I but Scotland is miles behind the rest of the UK in its response. 

“It was right that the Scottish Government listened to Liberal Democrat demands for brand new services and announced funding for specialist nursing and clinic support in the budget. 
“Liberal Democrats will be eagle-eyed to ensure this money finally makes its way to helping those suffering all across Scotland.”

Baillie says: “An announcement is one thing, but delivery has been wanting.”

She points to the patchy provision of care, the lack in many cases of a clear clinical pathway, the provision of only one service in Scotland for children, and the small numbers of patients receiving treatment. 

She says: “Additional money for long Covid patients is welcome, but this SNP government must explain what happened to the original £10m pledged if so little of it appears to be reaching the patients it was intended for.” 

As for Oscar, he says it’s refreshing at least to see it talked about by people in power. 

“Feeling seen and getting some recognition that we do have a real problem isn’t something I’ve experienced very often,” he says. “This gives me a bit of hope going forward.”