Clinical support

Participants described a long, challenging and uncertain route to accessing medical care with barriers at each stage of the process. This started with difficulty getting a GP appointment followed by scepticism and lack of empathy from GPs when participants described their LC symptoms. Following GP referral, participants were left on a waiting list usually waiting months or up to a year until they could access a LC rehabilitation clinic. The waiting time served to exacerbate feelings of uncertainty about their route to recovery and participants felt ‘left in the dark’ about what they could be doing to self-manage or improve their symptoms in the meantime. As participants waited to be contacted, they built up inflated expectations of the potential that rehabilitation clinics could have on their health outcomes as the clinics were described as a ‘secret club’ which would ‘hold the key’ to their recovery. Once participants accessed healthcare services they described a lack continuity of care, as they were passed between medical specialists for examination. This intensified the burden participants experienced, as they felt responsible to manage their condition and route to recovery themselves alongside the challenges of the life-changing symptoms they experienced. Finally, participants described the inconsistency of care and investment offered across the country, referring to the healthcare offered to people with LC as a ‘postcode lottery’. The negative experiences of waiting lists and lack of GP support were described by David and Ellie:

[A GP told me] anyone who had anything in the last two years blames it on COVID… I’m not looking for a magic solution [from GPs]… Just information and maybe a little bit of reassurance. David

There was a really big waiting, waiting list… it was just a complete void of what was gonna happen next… So just [needed] some kind of like, really basic information or updates on where you were in that process and what was gonna happen later. Ellie

Participants acknowledged the limitations of National Health Service funding and resources and practitioner’s limited medical knowledge of LC due to the novelty of the condition. However, they suggested various improvements for healthcare. First, GPs should have appropriate training of LC in order to provide more targeted advice, refer patients to the correct services and adopt a more empathetic approach. Another common suggestion was referral to an infectious disease specialist, who could follow their progress and provide a continuity of care, relieving individuals of the burden to manage their route through medical care alone. Physiotherapy and occupational therapy were suggested to provide training in breathing techniques, physical exercise and supporting individuals to complete activities of daily living. The need for psychological counselling was highlighted to support people with LC with symptoms related to mental health including depression and anxiety. In addition, psychological therapies should support the grieving process associated with losing the life individuals had before LC and accepting a new identity as a ‘sick person’. Overall greater empathy, information availability and wide ranging therapies were required by participants to be supported by health services. These points are highlighted by Rachel and Angela:

To have someone who is primarily looking after you and analysing everything and that kind of overview and then you can go to cardiology or to neurology, but then to kind of go back to somebody. That would be amazing. Rachel

It was really difficult to accept my new identity as a sick person, and someone who was always letting people down… I felt kind of embarrassed almost about having long COVID… having counselling really helped me to work through that. Angela

Employment support

For many participants, their ability to work was impacted by their LC symptoms, particularly breathlessness, fatigue, dizziness, heart palpitations and ‘brain fog’/cognitive deficits. Some participants were unable to continue working or found difficulty concentrating with regular rest required throughout the working day. Long daily commutes were especially noted as a contributing factor towards chronic fatigue which subsequently impacted performance at work the following days. Participants found that colleagues often did not understand the condition leading to friction and hostility, or awkward moments in which they had to explain to others why could not attend in person meetings or events. Managers requested medical verification of participants’ condition which they were unable to provide if their medical test results were ‘normal’, contributing to a sense that employers did not believe their condition. In some cases, participants filed issues against their employer, further exacerbating the stress experienced while managing their symptoms. The experiences of conflict at work associated with LC were described by Alison and Alice:

But [medical tests] come back normal and you’ve got Long Covid. Okay, well, that doesn’t really bode well for my boss who wants to see some kind of medical evidence that I’ve got Long Covid because he thinks I’m lying. Alison

I was off work two years and I had to fight with work because they couldn’t understand why I couldn’t come back… they were quite happy for me to just disappear. But I took a grievance out and I’ve got a part time [job]… I am absolutely ecstatic because I really, really didn’t think I would get back into the workplace. Alice

Oftentimes, the impact of the condition on participants’ ability to work had challenging implications on individuals’ self-image and sense of self-worth. Participants described the frustration of being unable to work at the level they could before LC, as they felt they were ‘not achieving their full potential’ and were subsequently ‘failing’. There was also a sense of loss of identity, as many participants tied their professional identity with their personal identity and sense of self-worth which were negatively impacted following LC. Some participants described themselves as ‘unreliable’, reflecting on the shame they felt at ‘letting others down’ at work, as described by Thomas:

I was one of the top salespeople in my particular department… And then when COVID hit, everything stops… I feel like I’m probably one of the most unreliable people there because no one ever knows when I’m going to be there. People at work just don’t get it all. It kind of can hit quite hard. Thomas

Participants identified various strategies to support people with LC in the workplace. Mandatory training for employers in dealing with chronic health conditions was noted as a strategy to promote a more understanding and empathetic approach. People with LC should be supported to work through a phased return to work programme, with options for ‘hybrid working’, working from home and part-time work. Some noted small adjustments that would be beneficial, such as providing a quiet area for people with LC to work and opportunities for rest and breaks. Furthermore, access to a workplace occupational therapist should be available where possible. It was also reported that LC should be recognised as an industrial injury where the virus was contracted in the workplace. Margot identified that these changes required enforcement through employment law:

You need to have a much more understanding, forgiving approach to it from employment law. And you know, the support you get in terms of paid sick leave or shorter hours or different ways of working. Margot

Disability support

Participants described wide-ranging, debilitating and life-changing symptoms following LC which impacted mobility, the ability to complete activities of daily living and employment. Many participants described working reduced hours or ending their employment following LC, resulting in a reduced income and financial shortfall:

I had to stop on my full time job and get a part time job… which was not convenient for my financial situation. So I really need more intervention in my financial level. Max

Therefore, there was a strong need expressed for government action to recognise LC as a disability in order to provide people with LC with disability support for the varied and personal challenges they faced. For example, financial support through the Personal Independence Payments (PIP) or subsidies:

The government also needs to recognise that long COVID, it is a serious illness and they need to sort that out. There needs to be some sort of a subsidy. Lisa

However, participants expressed confusion regarding whether LC was currently classed as a disability and a lack of information about the government support available to them. Specifically, there was some debate about whether the Blue Badge for accessible parking was available to people with LC, or whether this may be issued on the grounds of particular symptoms such as anxiety or immobility. Participants were reluctant to identify themselves as ‘disabled’, which appeared to reflect the difficulty they faced with their changing self-identity as a ‘sick person’. Alison described her confusion about the government support available to her and why the Blue Badge would meet her needs:

I’m not actually sure whether it’s classed as a disability… because I asked about getting a blue badge… I got told I don’t think you’ll get one because it’s not been classed as disability yet. If they can just tell you whether it’s classed as a disability… And there were some information out there about it. Alison

I wouldn’t say I was particularly disabled. But sometimes I think something like that [blue badge] will be quite handy because I’m terrible with inclines. Alison

Household help including cleaning, grocery shopping, gardening and dog walking were listed as ideas for local community care to improve quality of life by reducing daily demands and leaving more time and energy to do what they enjoy:

If we could have like funding and help for a cleaner to come that would take pressure off me… and do things you enjoy more, like walking with friends. Rose

Peer support

Many participants expressed the need for more LC support groups, both online and in-person. They highlighted the importance of building a network to connect with others who could understand them and create a sense of community. It was highlighted that this could help to alleviate the sense of loneliness and isolation experienced with LC, as others in the group could understand and empathise with the symptoms they were experiencing and the impact it had on their lives. Within a community support group, participants could share their knowledge of this poorly understood condition. This included exchanging ideas and tips for symptom self-management and opportunities to connect, receive support or participate in research. By connecting with others, participants felt that this ‘strengthened their fight’ against the condition and were more optimistic about their recovery. Kelly and Graham described the benefits of attending support groups:

It’s so nice to speak to people that are experiencing something similar to you. And it makes you feel so much less isolated. Kelly

Even just knowledge sharing like we’ve been doing today, just tips for coping. Graham

However, it should be noted that one participant reported mixed feelings about peer support groups following an experience of meeting others with less severe symptoms than herself. This shows how if an individual does not connect to the group due differing symptom severity, this could exacerbate feelings of isolation in their condition, breaking down the sense of community an individual is seeking. This was articulated well by Kelly:

If somebody’s not as bad as you, it… makes me feel a bit like, oh, why have I got it so bad? Is there something wrong with me? And that had quite a big impact on myself because I thought we were all in this together. Kelly

Research for new clinical tests

Many participants recalled the frustration and disappointment of receiving ‘normal’ results following medical tests, which did not explain the chronic symptoms they were experiencing. Consequently, participants wanted research to focus on developing new clinical tests that are better able to detect changes or damage in their body associated with their symptoms:

I think as well, like, more tests, because every test that you do it’s fine, like there’s nothing… actually that they can say but then… it just seems like the wrong tests. Rachel.

Research for treatments

By improving the understanding and detection LC-related changes to physiology, it was proposed that this could inform research into new treatment options. Drug treatments, cognitive training and physical exercise were suggested as possible interventions to trial, however, it was recognised that there may never be ‘a cure’ for the condition. Despite this, many participants expressed a strong willingness to participate in research and were keen be informed of the outcomes. They felt that participating in research would be a worthwhile and positive experience, as they could use their challenges to contribute towards a greater cause:

I’m happy to give my time and my blood and you know to research, because if it helps us finding cures and solutions… Make something useful out of something, yeah, that’s not great to experience. Rose

While participants were motivated to take part in research, they highlighted the importance of tailoring the study design to accommodate their needs. Researchers should recognise the additional energy required for people with LC to commute and take part in studies and possible accessibility requirements. Participants explained their ability to participate in research may depend on whether the study intervention fits into the current advice they are following and their work routines. Furthermore, researchers should be flexible in supporting those with LC to participate in studies due to the fluctuating symptoms, relapses and PEM which may affect their ability to take part:

I guess just listen to your participants when they come for that day, treat them on an individual day-to-day basis because they might come one day and they’re feeling really good and they might come the next day and feel like [rubbish]. Kelly

Educate society

Participants experienced judgement and stigma of their condition from others, centred around a lack of understanding of LC in society. It was acknowledged that LC is an ‘invisible’ illness, in which the symptoms may not be immediately obvious to others. However, this required participants to repeatedly ‘explain themselves’ and their condition which they found frustrating and demeaning. Participants found that others were dismissive of their symptoms or did not believe the condition existed, leading to judgements that they were ‘lazy’ or ‘overdramatic’ if the condition affected their daily life or ability to work. Furthermore, a lack of understanding of LC caused some people to have fear that the condition was contagious. David and Alison the lack of understanding they experienced from others:

A very significant number of people don’t take it seriously. They think it’s just being lazy or a bit shiftless, and you can’t be bothered to do stuff. If we could kind of somehow get rid of that stigma… that people wouldn’t willingly put themselves through these kinds of life limiting situations, I think that would be really helpful. David

Sometimes you’ll tell somebody you’ve got Long Covid and they jump back three paces because they’re gonna catch it… there’s a lot of ignorance around it. Alison

Therefore, participants expressed a need for greater awareness of LC in society by educating the general public about the severity of symptoms and prevalence of the condition in society. A number of suggestions were made for promoting awareness of LC, including publicising the experiences and common symptoms via local and national news reports and TV programmes. It was suggested that educating the public about LC may trigger action via government funding for research and support:

Maybe it needs to be on the news… Maybe it needs to be shown how many people are actually suffering with it… and then people might be more understanding. Megan

…get it out there, get it in the news, get it publicised and I’m sure eventually it would filter through and people will be aware of it and start, you know, start start doing things. Lisa

They reported that better public understanding of the condition would make others more sensitive and empathic to their condition and reduce the need to regularly explain the condition to others:

So I think if you could make it more like serious, almost… other people would then take it more seriously, and then that would then help us because we don’t have to explain ourselves… General awareness, but also awareness how serious it is and how like it does affect us. Rachel

Art, poetry and blogs depicting the experiences of LC were also suggested as possible media for influencing an emotive response from the pubic and encouraging a more empathic approach:

I think maybe art can bridge some of that gap a little bit… I wrote some poetry about my experience with Long Covid and showed it to my friend. They said it helped them kind of empathise a little bit more… That’s another way that our experiences can be communicated to the wider public. Angela