Thousands of Scots Living with Long Covid Left Unsupported and Unable to Work

• New report into CHSS survey findings reveals Covid is still shattering lives
• The NHS is failing to adequately support the 180,000 people across Scotland who are living with Long Covid
• Scottish Government’s Long Covid Support Fund is now in its final year, with no commitment to future funding
• 40% of surveyed people living with Long Covid said the condition affected their ability to work at all
• 41% had cut back on essential costs
• 71% said their mental health had been affected by their health condition
• Crawford Flint (pictured) lives with Long Covid and has been supported by CHSS’ Long Covid Support Group – he is no longer in work

A key finding of the report indicated that 40% of people living with Long Covid were unable to work at all due to their condition.  This could equate to as many as 72,000 Scots exiting the labour market since 2020*.

The report also revealed that:

• 72% of people with Long Covid said there was support they needed but weren’t able to access 
•  82% encountered some kind of difficulty in accessing services, with some struggling to access any medical support 
• 38% said their doctor wasn’t able to provide guidance on available support 

The charity surveyed nearly 2000 people living with chest, heart and stroke conditions and Long Covid to understand the challenges facing people living with the conditions it supports.

The results showed that access to rehabilitation services and the resulting impact on mental health were significant challenges.  The cost-of-living crisis was also highlighted as having significant impact on those living with Long Covid.

Chief Executive of Chest Heart & Stroke Scotland, Jane-Claire Judson said: “Covid is still having a huge impact on 180,000 people in Scotland and these people are living in crisis.  Not only are they experiencing a debilitating health condition, many are also facing extreme financial hardship due to their inability to work. Hardship that is compounded by the impact of the cost-of-living crisis.

“We need the Scottish Government to consider greater financial support for people living with Long Covid who are navigating this economic crisis and provide clarity around access and eligibility for benefits.

“The Scottish Government cannot leave people with Long Covid to face unemployment in an economic crisis. We urgently need the Scottish Government to review the financial support available and ensure that people can access it.

“People with Long Covid can’t wait any longer.  They are struggling financially and support from the NHS is patchy at best.”

Dr Amy Small, GP and Clinical Adviser to Chest, Heart & Stroke Scotland said: “Doctors are desperate to help people living with Long Covid, but sadly current pathways in most Health Boards don’t have the clinical support that are desperately needed.

“We do have medications that can be used to help treat the symptoms of Long Covid, but many GPs don’t have experience of using these medications and need support from those doctors who are used to seeing patients with the complications of Long Covid.

“More needs to be done to embed doctors within Long Covid pathways to support the Allied Health Professionals (AHPs) working in them.”

Real Life Experience 

Crawford Flint, 59, lives in Linlithgow, West Lothian, with his wife, Karen. He gave up work as Head of Training for an electrical wholesaler in 2019 and became a gardener. He has been living with the symptoms of Long Covid since contracting Covid-19 in March 2020 and now cannot work.

Like being sent from pillar to post – that’s how Crawford Flint describes his experience of being treated for Long Covid.

The 59-year-old has undergone a battery of tests, including several x-rays, ECGs and CT scans, all of which show him to be healthy. But he’s not healthy. He cannot work and he now relies on a mobility scooter to get about.

For Crawford, the lack of treatment for people like him is as big a problem as living with the condition itself. Any improvements in his health are down to his own efforts and down to the backing he has found with fellow sufferers in groups such as the Chest Heart & Stroke Scotland Long Covid Support Group.

Crawford, who lives in Linlithgow, West Lothian, with his wife Karen, said: “The CHSS support group has been great. 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. 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 should be one person in charge for the whole of Scotland and everyone else feeds from that. 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 can access that explains the symptoms and also directs them to what help is out there.”

Crawford got Covid-19 in the very earliest days of the pandemic. He’d gone to Murrayfield to watch Scotland play France as the UK began to move towards lockdown mode and began to feel ill within a couple of days.

He spent the next three and a half weeks in bed, fighting a persistent cough and high temperature. Karen kept her distance, bringing food and drinks to the spare room where Crawford had hunkered down.

Having retired from a 30-year career with an electrical wholesaler in 2019, Crawford had taken up doing gardening and handyman jobs locally. After that first month with covid, he was able to go back to his job, working outside as the UK remained in lockdown.

He said: “I was probably able to do two to three hours without being really exhausted. And I was building that up a day at a time. That September they reopened the gyms, and I was going four-five times a week. I was probably as fit as I’d ever been in my life. But by December, I was starting to have breathing problems even though I hadn’t been ill again.”

The first series of tests at St John’s Hospital in Livingston were all clear. Crawford was sent home, but his breathing didn’t improve, and six weeks later he was back at hospital. Another round of tests came to the same conclusion. But still he couldn’t breathe.

He said: “And that was me for most of 2021. 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.”

Like many people who failed to shake off Covid-19, Crawford began to do his own research into Long Covid. One thing that caught his eye was an article on the potential benefits of hyperbaric oxygen therapy, which involves breathing pure oxygen in a pressurised environment. He found a centre in Stirling, which treats MS patients, and made an appointment.

He recalled: “That was an absolute game-changer for me. It took a few sessions, but I was finally able to speak without gasping for breath.

“I also came across a doctor called Claire Taylor who has set up her own clinic to help Long Covid patients. I saw her and she recommended several things for me to take back to my own GP, including getting an asthma pill, which became another game-changer for me.

“We’d gone away with friends to a hotel, and one had brought along a wheelchair. I wasn’t keen, but it turned out to be the best thing anyone could have done for me. I’ve now got a mobility scooter so I can get out and about on my own, and I applied and got a blue badge for the car.”

While Crawford can point to gradual improvements in his health thanks to the oxygen treatment and taking the asthma medication, he describes himself as “100 times better than I was but 1000 times worse than I used to be”. And he speaks with passion how lucky he is not to need to be working compared to some of those who share their experiences on the CHSS Long Covid support group.

He says: “The group is great, but it’s often harrowing because of what people are going through. It’s become a real place to share advice as well as experiences, and that’s so important.

“Dr Taylor gave evidence to the Scottish Parliament, and she told them Long Covid is the first illness in history where we are giving people rehab without first treating them for the illness.

“I’m not saying there is a cure right now. Hyperbaric oxygen has made a massive difference for me, and it would make a massive different for probably 75 percent of those with long covid. But it’s not a cure.

“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. And those specialists are looking for what they know, they’re not looking for the novel effects of Long Covid.

“And 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.”

Crawford remains upbeat, despite everything. He now volunteers for an hour a week with MS and Oxygen Care Therapy – the charity that provides access to hyperbaric oxygen. Demand of the service has grown in recent years, with many other people living with Long Covid also attending the clinic.

Crawford was also able to walk his daughter Emma part of the way down the aisle at her wedding last April, something he would have been unable to do early in his diagnosis. He says, “My wife made sure I had my mobility scooter on hand – just in case – but it was fantastic to be able to play my part in Emma’s big day.”

If you’re living with the effects of a chest, heart or stroke condition or Long Covid and looking for advice and information, please contact Chest Heart & Stroke Scotland’s Advice Line on 0808 801 0899. You can also text NURSE to 66777 or email adviceline@chss.org.uk.

*ONS report states that since 2020, over 180,000 people in Scotland have developed Long Covid