As many as 180,000 people in Scotland are living with the long-term effects of COVID-19.

Some of them have shared their experiences with a national charity –feelings of being “completely left alone” by services, their frustrations as they try to access support and the ongoing financial burden their illness has left them facing.

With 2,000 responses from people across Scotland living with long COVID revealing the ‘significant challenges’ on their mental and physical wellbeing, the charity says the UK and Scottish government must step up.

Nearly two thirds of people with long COVID responding to a recent Chest Heart & Stroke survey said they had experienced loneliness as a result of their condition.

One survey respondent said:

“I have long COVID but feel completely left alone to deal with it, the GP has not signposted me to any resources imor referred me to anywhere. They just said I have to sit it out.”

Another shared that the overwhelming fatigue and asthma brought on by long COVID had led them to become depressed.

Financial support

One person responding to the survey reflected on the compounding costs of long COVID after being unable to work for over a year, with private doctors, medications, and mobility aids “financially crippling” them.

Almost two in three people responding that their long COVID had been impacted by the cost-of-living crisis and two in five having to cut back on essentials including heating, some shared their difficulties accessing benefits.

One explained how “humiliating” the benefits process felt:

“No access to benefits after months of trying.

“I feel because long COVID is a somewhat invisible and fluctuating illness, we are hugely forgotten and not taken seriously by many – including DWP.

“Because I am currently unable to work, I will lose my job. Filling in the horrendous forms for ESA and PIP or ADP, is not only mind boggling and energy sapping, it’s degrading and humiliating.”

A healthcare lottery

Crawford Flint form Linlithgow, West Lothian describes his experience with long COVID as a ‘battery of tests’ including X-Rays, ECGs and CT scans which failed to pinpoint the cause of his symptoms.

While through the lens of these tests Crawford appeared healthy, he has been struggling with long COVID since March 2020, cannot work and now relies on a mobility scooter. He says most of 2021 was spent unsupported, struggling to breathe:

“By the end of the year, I’d not been out of the house for about six months because I couldn’t walk, and I couldn’t talk. I couldn’t walk to the end of the street – I still can’t walk to the end of the street.” 

For him, the lack of available treatment is as big a problem as living with the condition itself. He says any improvements he’s seen in his health has come through personal effort and support from groups like the Chest Heart &Stroke Scotland long COVID support group.

He adds that the group has also shed light on some of the differences in care available across country:

“You’ve got folks from Shetland to Dumfries, and what’s noticeable is that you see the difference in the quality of care between different health boards and even different towns. 

“It’s a lottery and it shouldn’t be. We’ve got 14 health boards and 14 different versions of long COVID services. GPs are often sending patients on a wild goose chase as there is so little understanding of this illness, but I was one of the fortunate ones because my own GP was very sympathetic and did everything possible to help me within the guidelines. 

“There’s no treatment for long COVID but there’s also not enough information at all about the condition. We need a simple A4 information sheet that people that explains the symptoms and also directs people to what help is out there.”

While there are few treatment options for long COVID, much of the NHS support that is available centres around rehab.

Yet, 43% responding to the Chest Heart & Stroke Scotland survey say they were not referred for rehab services at all. One respondent says they were told there was no physiotherapist in their area that deals with chronic fatigue type symptoms, adding:

“I have had to train myself to keep calm and to pace myself because if I try to do more than I am capable of it takes days to recover.

“It really would help to talk to someone that understands the issues and what might help.”

Crawford Flint says, through his own research into long COVID, he found a centre in Stirling which treats MS patients with hyperbaric oxygen therapy – a process which involves breathing pure oxygen in a pressurised environment.

For him, this was “an absolute game-changer”, helping him to speak without gasping for air.

He says:

“I’m not saying there is a cure right now. We know the NHS has finite resources, but they need to stop the duplication that goes on.

“The GP is always the one in the middle who will send a patient to cardiology and then to neurology and so on. When they have exhausted everything, you’re exhausted too, and the GP’s last resort is usually to offer you antidepressants.

“We’re sending patients from pillar to post. We need coordination and we need treatment.”

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