Is Scotland Being Left Behind In The Fight Against Long COVID?

“It’s very deeply embedded that in society you have sick people, they go through this ritual of medicine and then they’re well – that is what people are supposed to do,” said Long COVID patient and campaigner Barbara Melville. “People with Long COVID aren’t doing that.”

After identifying a lack of location-specific campaigning for Long COVID patients in Scotland and feeling like she had been “left at home to die”, Melville was one of the founding campaigners in Long COVID Scotland. “A few of us started to get together and talk about what we could do from a campaigning perspective. And it was, well, not a magical time in terms of the pandemic but an amazing time in terms of the stuff that we got done.” The organisation campaigns to raise awareness of the condition, to improve therapies and research, and advocates for the government to improve its messaging around the silent crisis amidst the coronavirus pandemic. 

A patent-coined name, Long COVID refers to symptoms following a COVID-19 infection that last for more than four weeks. It is an umbrella term that defines a wide array of symptoms, care opportunities and experiences. Long COVID can be used by a broad range of COVID-19 patients, including hospitalised or non-hospitalised patients, people with initially mild infections that develop long-term symptoms later on, and people with visible organ damage or post-ICU syndrome.

A study released in June 2021 revealed that one in 20 adults had persistent COVID-19 symptoms. Using survey data from an Imperial College London study, the research showed that more than 6% of people with the virus had experienced one of the 29 associated symptoms for 12 weeks or more. Applied to the larger population, this means that more than two million people in England could be living with Long COVID.

“There are hideous experiences for different people, depending on what kind of palette of symptoms that they have and then, of course, every other area of life is affected,” Melville said. “You go to your employer, and they blow the cobwebs off this policy for how you’re supposed to phase people back into work, and it doesn’t fit Long COVID.”

Using her own experiences of Long COVID, Melville and Long COVID Scotland are working together to expel the silence around the condition and tackle its impact on society head on. Based in Edinburgh, Melville has spent the last year working with Long COVID Scotland to raise awareness of the plight of Long COVID patients who are struggling without medical recognition and trying to heal with limited resources available. 

“People do an awful lot of work advocating for themselves, filling out forms, going to tribunals, complaining to doctors, and so on. And so they’re putting an awful lot of themselves out there even if they’re not feeling well”. 

Although Official for National Statistics figures estimate 74,000 people in Scotland are living with “self-reported” Long COVID, Chest Heart and Stroke Scotland’s support service say that they are only managing between 55 and 60 patients per month. While in England, the UK government has pledged £34 million to fund more than 80 Long COVID clinics, however, Scottish health secretary Humza Yousaf believes Long COVID clinics could take away “precious” resources from other parts of the NHS.

During the pandemic, the Scottish government has failed to pay lip service to Long COVID and its impact in the daily briefings, which Melville says has left many patients feeling left behind by the very people meant to reassure them. 

She said: “Long COVID is very, very rarely mentioned in the first minister’s daily briefing, there’s nothing about it so people don’t know what’s happening and they describe feeling stonewalled.”

Currently, organisations like Long COVID Scotland are shouldering the responsibility of communicating key information to new Long COVID patients and pushing for increased awareness of the condition.  

Beyond dealing with the varied symptoms of Long COVID, patients are facing difficulties securing sick leave, explaining their experiences to well-meaning loved ones and tackling mental health issues arising as a result of the damaging impact of the condition. 

“Every part of life is affected,” said Melville. “Friendships are affected because friends don’t get why you’re not getting better either. It has an impact on the economy, because we’re not being championed, treated and diagnosed properly. It has an impact on us and our families. It’s just so widespread; it takes over everything.”

For our Long COVID week, we spoke to Melville in a wide-ranging interview to understand how better communication can be the catalyst for more effective research, therapies and awareness of the lasting impact the condition has.

Can you explain what Long COVID is?

It is a multi system, multi symptom condition affecting the entire body. It can roughly be summed up as you [might have] cardiological symptoms, respiratory symptoms, neurological symptoms. Some people have more than that, though. It seems very, very similar to other conditions like ME/CFS, postural tachycardia syndrome and muscle activation syndrome, it may well be the same thing. But what I think makes it a little bit different is it also includes the experience, so I usually define it as being long-term COVID-19 experiences – it can also be what you went through. Back in March 2020, I felt like I was left at home to die. That, to me, is part of Long COVID. It can really be anyone who has been ill from COVID-19 for more than a few weeks and they can use that term to describe those experiences – physical, psychological, social, cultural, the whole thing.

Where did the idea for Long COVID Scotland originate?

There was a campaign and support group set up for the UK back in May 2020 called Long COVID Support. I was one of the founding campaigners with that group, I joined when there’s only a couple of 100 members. And a few of us started to kind of get together and talk about what we could do from a campaigning perspective. When something is UK it is often [only focused on] England. Myself and a few of my peers saw a need to say ‘what about Scotland?, so that we weren’t constantly asking our peers in the UK group to always include Scotland because we are a different nation with different legislation.

What do you focus on within the group? 

We have lots of people doing different strands of work. We have a campaign strand, we have a relationship with the Scottish Government, we have a huge research triangle working with various researchers in Scotland and beyond. 

In terms of day-to-day-functioning in a society pushing us to act as if there isn’t a pandemic hanging over us, how would you describe the impact of Long COVID on the average person who has it? 

Yeah, that’s brutal. I think that’s the context which is affecting the whole thing. There is this idea that you have sick people, they go through this ritual of medicine and then they’re well. That is what people are supposed to do: you go through the process, whether that be getting tests on diagnostics, going into hospital, and you emerge as a well person. People with Long COVID aren’t doing that. People with ME/CFS don’t do that, people with any kind of chronic condition don’t do that, and I think it disrupts the narrative. People find it very difficult. They think, well, if that were me, I would have emerged from the series of rituals as a well person and it ends up going back on the patient and they get blamed.

We’re operating with all this kind of anthropological stuff going on, where people are quite angry with people who have chronic illness. I remember feeling like that when I was younger, like ‘why don’t you just quickly just do some yoga?’ That is happening a lot [for Long COVID patients]. It happens when you’re going to the doctors as well. They’ve been amazing, same with other healthcare staff, but at the same time, there’s a lot of medical gaslighting going on with people not getting taken seriously. It’s all happening with this horrific context, you’ve got these horrible symptoms, which can negatively affect your day to day life, and it can be very different for different people. 

There are hideous experiences for different people, depending on what kind of palette of symptoms that they have and then, of course, every other area of life is affected. You go to your employer, and they blow the cobwebs off this policy for how you’re supposed to phase people back into work, and it doesn’t fit Long COVID. People say, well, ‘that isn’t quite going to  work for me’ and they don’t get the responses they want. People are often forced back to work too soon, or they’re losing their jobs. People who are unemployed are terrified about how they could possibly get a job as well. 

How are the lives of people with Long COVID being affected?

Every part of life is affected. Friendships are affected because friends don’t get why you’re not getting better either. They try to be helpful by giving you – usually unsolicited – advice about things that you could try. It has an impact on the economy, because we’re not being championed, treated and diagnosed properly. It has an impact on us and our families. It’s just so widespread; it takes over everything.

How is Long COVID affecting ethnic minority groups and people in other marginalised groups?

If you have an existing inequity, good luck to you. It is really, really difficult for people from underrepresented groups. That’s something we’ve observed in our group. There’s health literacy issues as well, people who might not feel confident going to the doctor and advocating for themselves. Women especially have issues around medical gaslighting.

I think that’s because it’s a feminised illness, it comes across as ‘just kind of buckle up and get on with it’. 

What are the specific issues for Long COVID patients in Scotland?

It’s not just lack of clinics, it’s the lack of communication. There is almost this silence. Long COVID is very, very rarely mentioned in the first ministers daily briefing, there’s nothing about it so people don’t know what’s happening and they describe feeling stonewalled.

How has Long COVID affected people’s human rights?

We have a right to healthcare and to dignity and respect when receiving that healthcare, and that’s not happening. It’s an old problem, but Long COVID is shining a light on it. I think that’s something that really needs to be addressed. Human rights look great but they don’t always happen in practice. I think discrimination is a huge one that we need to be looking at too. 

Humans have a right not to be tortured and degraded, and I feel like I’ve been tortured and degraded. Yes, no one has tied me to a chair and put needles under my fingernails, but I have been gaslighted by so many people, including doctors and trolls on Twitter. That has happened to me and others repeatedly and it has affected my psychological health and  other people’s psychological health. That is torture, to treat somebody like that. 

Barbara Melville was originally interviewed by Dhruva Balram in summer 2021. This article was written by Hannah Shewan Stevens from those transcripts.