Description of dataset
Demographic and selected occupational details of participants are shown in Table 1. The final sample was 70% female and 75% White. By comparison, long Covid support groups are up to 86% female and the UK population is 80–85% White British (depending on how defined) [45]. A high proportion were health professionals, many of whom pointed out that their professional expertise and experience had shaped their understanding of their illness and ideas for changes to services.
The 55 interviews and 8 focus groups produced over 1000 pages of transcripts and notes. Our analysis surfaced themes in five inter-related categories which we discuss in more detail below: the illness experience, accessing care, relationships (or lack of) with clinicians, emotional touch points in encounters with health services, and ideas for improving services.
In the sections below, we use pseudonyms when quoting participants who were interviewed individually; when quoting focus group participants, we indicate the type of focus group (e.g. allied health professions, lay participants).
Before considering the experience of long Covid, it is worth observing that only a small proportion of the participants (8 of 114) had been hospitalised, and 96 of 114 had not even been assessed in the Accident and Emergency (A&E) department. Indeed, it was evident that many of our participants had either sought to avoid attending hospital (because they knew it would be unpleasant or because they did not think they were very sick) or had been reassured by call handlers or clinicians that they were not sick enough to be admitted.
Although I work in a hospital environment and wouldn’t say I was frightened of it or anything, you kind of knew as well that it wasn’t, it wasn’t the environment you wanted to put yourself in unless it was absolutely necessary as well because when like my symptoms were just exhaustion well I felt quite comfortable in my own bed and safe.
[Participant in Nurses/Allied Health Professions FG2]
This study was not designed to determine the causes of long Covid, but the findings that so many had not had emergency assessment or treatment are consistent with emerging hypotheses that one key cause may be prolonged untreated hypoxia [46].
A serious, uncertain and confusing illness
Participants with long Covid described symptoms in every part of the body which were sometimes severe or fluctuating, made worse by the uncertain prognosis and stalled recovery, all of which combined to make this a frightening, confusing and debilitating illness. Many were unable to make sense of their suffering – an experience intensified by absence of medical knowledge or guidance. They described being trapped in a cycle of small improvements followed by setbacks which were physically and emotionally stressful, with no clear prospect of full recovery.
I’ve been absolutely floored and I don’t know… I mean I’m just at the beginning of… I’ve got all sorts of… I’ve got… I see in [Town A] tomorrow, a rheumatologist, to find out what I’ve got because I’ve got vasculitis, which I think is a common thing [ … ]. So, I don’t know how long that’ll unfortunately go on for. And I’ve been left with nerve issues, like really horrible nerve… stabbing pains in my hands and feet and I can’t move my toes anymore either, so I don’t know what the long term effects; I’m only at that point of just beginning to discover what the long term effects are, which are the ones that are kind of you expect to only affect people that were seriously ill in hospital, not the sort of the everyday people that managed at home with it really, so. So, I think my… unfortunately, my journey is far from over.
(Individual interview, Jennifer)
Many participants described themselves as previously fit and active. They described having to come to terms with a dramatic decline in their ability to perform basic everyday activities.
And the fatigue is literally like hitting a wall. I can’t stay awake any more. It’s just like, wow, I have to go to bed.
(Individual interview, Adam).
Participants had discovered the need to establish new routines and explicit self-disciplinary measures. These included counting steps and planning out visits to the shops to avoid inevitable exhaustion if they over-exerted themselves:
My energy levels returning, that took me weeks and weeks. I mean … this morning I went for a two hour walk and actually when I got back, I slept for two and a half hours.
(Individual interview, Siobhan)
Symptoms such as fatigue and cognitive blunting (“brain fog”) severely limited the prospect of returning to work or finding new employment, as this office worker describes:
I’m not working, I haven’t… I wasn’t able to go back to work and then I got made redundant. I’m… I can’t even imagine how I’m going to find a new job yet. In the last week, I’m wondering because my brain fog seems to have lifted and it’s feeling possible finally, after nearly six months, that I might one day find a new job. But my life is just nothing like it was and it’s not really the life I want, you know; I need to improve.
(Individual interview, Anil)
A few participants in our sample (both clinicians and non-clinicians) made comparisons with post viral fatigue states like myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). They expressed empathy and newfound solidarity with people suffering with these conditions. More commonly, our respondents felt the fatigue they were experiencing was distinct, and a consequence of their organ damage.
The level and duration of debility experienced by participants in our sample often drew a negative response from friends, family or employer (as early expert advice suggested that non-hospitalized patients with mild disease would recover in 2 weeks [47]), especially when they had not had the disease confirmed by a test.
The only reason I wanted the test is, however lovely friends are, it didn’t fit the two-week image they had of what this illness looks like. They said are you sure this isn’t anxiety? High pollen? It [wanting a positive test result] is more for validation.
(Individual interview, Bruce)
Doctors and other clinicians in our sample described how their symptoms and the accompanying prognostic uncertainty, in addition to having all the effects listed above, had also stripped them of confidence in their professional abilities. They were especially afraid of the impact of cognitive deficits that might make them unsafe as clinicians. Some were keen to quantify their deficits by formal cognitive testing.
[T] he medicolegal aspect is huge and I think possibly certainly feels that way as a GP and it’s scary to not be able to recognise potentially where you have deficits because if you can’t recognise them then that’s an unknown unknown in what can you do with that. And just the sort of fast-paced nature of GP and as [another participant] mentioned earlier you’ve got all these things having to kind of keep windows open at once. [ … ] It seems terrifying to think how we’re going to get back to it
(Participant from Doctors FG1)
In some cases, these professional concerns were compounded by the perception that clinical colleagues disbelieved or dismissed their symptoms as “just anxiety”.
Difficulty accessing and navigating services
Participants found accessing care complex, difficult and exhausting. Many had contacted the national telephone advice service, NHS111, as directed by public messaging. They reported what they felt were delayed, absent or inappropriate responses due to pressure on the service itself, a perception among providers that their symptoms were less serious than they actually were, or lack of clearly defined care pathways for patients with long-term persisting symptoms.
One day I had blue finger nails and I wasn’t cold and my husband was working at home at the time and I said to him and he looked, I mean I’d real proper cyanosis on all my finger nails and I phoned the GP and the GP answer phone said if you’ve got any of the signs of, of Covid please ring 111 and so I rang 111 and, I live in [city with high incidence of Covid-19] I don’t know if that makes any difference but I was put on hold and after over an hour, an hour and twenty minutes nobody answered so I just put the phone down because I was listening to music and a looped tape of what the symptoms were and I was getting, going crazy
(Participant from Allied Health Professionals FG2)
Remote by default primary care services accessed through ‘total triage’ (which required every patient to complete an online consultation form or have a triage phone call) had been introduced as part of infection control policy in England and Wales in the acute phase of the pandemic [48]. This system had generated additional queues and obstacles to getting seen by a general practitioner. These were particularly burdensome for participants whose disease was draining their energy or who did not own mobile phones.
I’ve been able to get a lot of, book a lot of services online on the internet, they’ve now switched to Dr iQ which is only for mobile phones at the moment, I can’t afford my mobile phone, I have to phone in my deepest coma sleep at 8:00 am to talk to any GP now.
(Participant in Lay FG1)
Some participants who had been discharged from hospital or contacted the national helpline NHS111 had been directed towards their general practitioner for managing long Covid symptoms (since the NHS111 route had been designed for acute Covid-19), but then directed back to NHS111. There was perceived to be a missing tier of support between patients self-managing their own symptoms and presenting acutely to hospital or being seen in a specialist clinic.
The focus when you do get a new GP speaking to you seems to be that they go back to the beginning and I’ve had a few consultations where I know I don’t need to go to hospital but your assessment is really all around ‘do I stay at home and wait this out or do I go to hospital?’ and there’s nothing in between that. And I think if there was the same GP who we are able to consult regularly they would build a picture of your baseline and I think that’s what’s lost with digital ways of working.
(Participant in Doctors FG2)
Some though not all general practitioners were reported to be unaware of rehabilitation services locally. Clinicians in our sample described finding out about rehabilitation clinics themselves and then asking for a referral. Few participants had been referred to a specialist. Some who had received a specialist assessment described the experience as fragmented (they felt that “one bit of me” had been assessed by organ-specific tests and imaging, but there had no overall assessment of how long Covid had affected them generally and how they were functioning on a day to day basis). More often, they found local hospital outpatient services effectively closed for business, leaving them with no clear options.
I’ve had to do a lot of this myself, to be honest. It was in the early on stages, I actually rang around the hospitals to see if there was anything, so, but there wasn’t anything. I just rang the switch board and said, ‘What’s the deal with people who’ve had Covid?’ But they said nothing. Gosh, yeah, I was desperate. I’m sorry, I’m one of these people who want answers and I wasn’t getting any answers’
(Individual interview, Annette)
As the above quote illustrates, many participants did much work to self-advocate by emailing, telephoning or otherwise cajoling providers to make referrals or circumvent bottlenecks. These efforts occasionally included attempts – perhaps out of desperation – to ‘play’ an algorithm-driven system by omitting information (for example, deliberately conveying the impression to a receptionist or call handler that they had not had Covid-19). Others called on contacts or friends of friends to secure ‘back door’ appointments. Clinicians who used such tactics expressed guilt but also anger that most fellow sufferers lacked the kind of system knowledge that would allow them to do the same. Some non-clinicians, however, showed remarkable resourcefulness in this regard. The participant below describes her efforts to work around an NHS111 online form in order to be seen by her GP for a blood test:
I did the e-consult – I had to do it a couple of times – I kind of learned to answer the questions to get it to send a message to my GP surgery … If you say you’ve got heart palpitations or breathlessness it’s telling you to call 111 which I didn’t want to do. And so I had to downplay symptoms [laughs] to get through. I cancelled it and did it again.
(Individual interview, Sarah)
Another tactic employed, especially by clinicians who suspected they had end-organ damage, was to seek a private consultation. We heard several accounts of privately-ordered specialised tests (such as cardiac magnetic resonance imaging) which confirmed such damage; positive test results helped to validate their illness and (sometimes) gained them a specialist NHS referral.
Concerns about quality and safety of care
Some of our participants described strong therapeutic relationships with particular clinicians. They described how these clinicians listened to their stories, believed them, validated their suffering, acknowledged uncertainties, arranged appropriate tests and follow-up, and offered continuity of care.
I was amazed at my experience because she was kind, empathetic she was compassionate [um] on the phone and she was listening to everything I was saying no matter how random or crazy the symptoms sounded but not only that she, I think for the first five days after I called her she had a daily check in call with me to monitor how I’m doing so it was like a ten minute phone call every day for the first five days (Participant in Lay FG1)
Unfortunately, such experiences were greatly outweighed in our dataset by the many who expressed concern that their clinician did not recognise their condition, did not believe that it existed, did not know how to diagnose it, did not empathise or acknowledge their suffering, did not know how to manage it (including ignorance of local rehabilitation services and referral pathways described above), and refused to test or refer. Some participants felt a responsibility, on behalf of fellow sufferers, to persuade clinicians that their symptoms were real, undertake their own research (individually or collectively) on this novel disease, and construct their own care pathway in the absence of an established local one. The following is from a patient who was getting troubling palpitations which they were aware could have a cardiac cause.
They said ok we’ll get someone to phone you. My GP called back and just said ‘oh well it’s probably anxiety’. He didn’t seem to have any idea what it could be. I felt fobbed off. I said I’m worried – there are articles and news outlets that I’ve been reading and I want to know what’s happening to me – people are having strokes, blood clots. I haven’t been to hospital but I’m concerned I’m still getting these effects. He said ‘oh you’ll be fine you’ve only had it mildly’.
(Individual interview, Clayton)
Whilst many participants liked the convenience of remote consulting (usually by telephone), others expressed concern about a lack of face-to-face examination, particularly for worrying symptoms. In some but by no means all cases, a request for a consultation was picked up by whoever was on duty, leading to loss of continuity of care – which mattered because the person’s story was often long, unusual and complex. Others described negative impacts on their clinical management. One patient with diabetes, for example, had developed pain and tingling in the hands and feet and reduced ability to walk, and was surprised not to have been invited in to be examined.
Several participants related what may have been significant events which raised safety concerns. Some of these seemed to have been compounded by remote assessments and over-adherence to protocols.
About five weeks in I think it was for me I was still desperately short of breath, a little bit better than right at the start, but it was still coming back in massive waves. And I remembered ringing my GP from the floor on my lounge, laying on my front and kind of saying ‘I’m really short of breath, you know, do you think I should try an inhaler? Do I need to go back to A&E?’ and I was kind of told ‘Well you don’t really sound too out of breath over the phone’. And I got given diazepam and I was just kind of just heartbroken at that point I was just absolutely like ‘Right I’m, I’ll take it so that I can tell you tomorrow maybe that that hasn’t helped or whatever’. But I just, I really felt at that point right if you could see me you would see that I am really like broken.
(Participant in Doctors FG2)
One interviewee described making a total of 16 phone calls to obtain a repeat prescription for an asthma inhaler. They had told a triage administrator that the long Covid had exacerbated their asthma, been told to contact NHS111 because this was what the protocol demanded for Covid-19 symptoms, but then been told by the NHS111 doctor to request the repeat prescription from their own doctor. The duty doctor eventually phoned them and told them they did not sound breathless enough to be given an inhaler. Further phone calls were needed to track down the regular general practitioner and secure the inhaler.
Given the many and evident gaps in services, many participants – both men and women – found that online peer support groups offered the greatest source of support through shared experiences, knowledge and validation. These groups contained considerable experiential expertise, and many participants heard about them from professionals who recognised the limitations of their own knowledge and understanding.
At least I know I’m not alone. And I think people who actually have had the disease tend to know a little bit more about it. So, you know, sixth sense, I actually think that the support group has given more knowledge than the doctors have.
(Individual interview, Lottie).
Discovery of such groups were described as “epiphany” moments and as “salvation” by participants, giving them hope that they might begin to move on from the chaos of long Covid illness and onto a story of restitution [27].
Emotional touch points
The experiences described above were associated with what Bate and Robert have called emotional touch points [49]: powerful feelings such as anger, frustration, fear and hopelessness. Our participants described feeling physically and emotionally exhausted from the burden of trying to access services, be believed, navigate incomplete and inadequate care pathways, gain knowledge, organise their own recovery plan, and integrate their own care across a disjointed and siloed service. Some talked of a profound breakdown of trust in a previously valued family doctor service.
When asked what changes would be needed in services to avoid or repair these emotional touch points, participants made many suggestions, from which we distilled what our participants felt were key quality principles for a long Covid service (see Panel).
