We present our findings on LC healthcare services in the UK broadly through three dimensions of the health system: primary, secondary and LC specialist care. While acknowledging that services also exist between and outside these systems, we briefly mention them to provide a broader view of LC healthcare. Figure 2 shows three overarching themes: theme 1 reports continued hurdles in accessing the first point of contact for LC healthcare; theme 2 highlights the complexity in progressing through secondary care; theme 3 captures unique challenges to the propagation of integrated LC care pathway. These themes are used to capture a systemic view of how people with LC are (or are not) supported in a person-centred manner. Our findings and the three dimensions of healthcare they encompass are interconnected. As we found, people were often bounced between these systems; practitioners also sought to cooperate across their own remit with practitioners from diverse fields.
The person-centred lens here is used as an overarching framework providing a consistent thread to understand the quality of healthcare for LC sufferers. This lens focuses on multifaceted needs, including individual, relational, and existential aspects, all of which are interconnected, shaping individual health and healthcare experiences in nuanced ways. As such, we examined how these needs are address/overlooked both within specific and across healthcare systems, exploring how person-centred lens can inform healthcare services, to more holistically (multifaceted needs) and consistently (across settings and time), to support LC. To protect participants’ confidentiality, pseudonyms are used throughout below.
Theme 1: Continued hurdles to accessing primary care and to entering healthcare systems
Ongoing access barriers
Primary care as the first point of contact with healthcare is often the principal gateway for people to enter health systems.. A predominant message voiced by our participants across the two phases of interviews is the significant barriers in accessing primary care, particularly general practice (GP) services, including not getting an appointment, receiving inadequate care and having to be persistent. Research has found that the COVID-19 pandemic has created a ‘perfect storm’ to exacerbate the already pressurised primary care services10.
During the first phase of interviews in 2021-22, over 70% of our 80 LC participants faced significant challenges in securing GP appointments for their acute and persistent COVID-19 symptoms. Reported access barriers included “waiting on the phone for over two hours”, “making 100 calls on a Monday morning”, as well as “being turned away by receptionists or nurses before seeing a GP”. The struggle with access is vividly captured by Barry’s experience:
Barry: “You’re almost like a leper going to the GP, just can’t get to the surgery… I just can’t see a doctor. It’s all done like this. You know, sometimes just done over the phone, it’s not even a video.” (Male, White British, 63, West Yorkshire, phase 1 interview)
The situation had not improved significantly later in 2022, the rate of participants in phase 2 experiencing GP access barriers remained high, with over 65% affected. This continued delay and inaccessibility was also acknowledged by the GPs who we interviewed in both phases, reflecting long-standing issues related to budget caps, backlogs and workforce shortages in primary care. The ongoing hurdles in obtaining basic medical support, as well as clarification and reassurance, led to increased frustration and health-related anxieties among many of our LC participant:
Susan: “You don’t know the fact that maybe you haven’t had treatment or things haven’t been picked up, maybe will impact your long-term health because you’ve been waiting for so long. I think that’s also the thing, you know, have I missed the time to get some treatment or something?”. (Female, White British, 51, Southeast, phase 2 interview)
Alternative to GP care
Due to the ongoing barriers to accessing primary care, many LC participants had trouble accessing NHS healthcare for medical support, leading them to explore alternative ways to address their health concerns. They often resorted to self-management, using methods like painkillers, supplements, exercise, and meditation to cope with their symptoms. Some sought advice for LC symptoms from resources like the Internet (particularly online self-help groups) and local communities, including pharmacists. Only a small number of participants (just seven in phase 1 and five in phase 2 interviews, respectively) were able to access private GP services.
Despite ongoing barriers to accessing primary care, some participants, particularly those with urgent symptoms, turned to emergency care for faster and more immediate access to healthcare. However, emergency care often provided one-off support without follow-up, leaving participants like Sara without continuous assistance for their ongoing struggles:
Sara: “I went to hospital and had x-ray, blood tests done and they said ‘you’ve got a blood clot, we think it’s on your lung but we need to book you for a CT scan’… [following the scan] I came home and they gave me some blood thinning tablets and after about 10 days I had a CT scan. Whatever it was the blood clot was not there anymore. They said that ‘there’s some damage on the lungs’. So they gave me some inhalers and I got to go home. So after that I wasn’t well at all… They could clearly see that but what the long effect is we don’t know. But I’ve not been back to the GP to find out, the only follow-up appointment I was offered was in hospital with the blood clot.” (Female, British Pakistani, 30s, Bradford, phase 1 interview)
The above experience underscores the ongoing call to emphasise the significant role of primary care in LC healthcare9,33. Nonetheless, due to persistent access barriers and/or previous negative healthcare experiences, approximately half of our participants felt “exhausted” and had to “give up” trying to engage with their GP and enter the healthcare system. The number remained persistent in phase 2, further fuelling people’s anxiety and worries about their symptoms.
Increasing awareness of LC
Despite a rather disheartening picture depicted above, we also observed improvements in primary care for LC sufferers during our two-phase interviews (November 2021 – October 2022). In phase 2, some of our LC participants reported increased awareness of LC as a novel medical condition among professionals. These improvements in primary care were also supported by accounts from primary care practitioners, with one GP mentioning that she had more information to draw upon to recognise and empathise with patients’ LC symptoms:
“I think I’ve seen patterns I suppose of what people have had. So certainly right at the beginning, it was all the lost your taste and smell and you’re going to have a cough and breathlessness, particularly kind of neuro type symptoms. Those kind of things I can reassure patients that I’ve seen and that people generally tend to get better, so you get a bit more idea of what kind of symptoms are coming.” (General Practitioner, Bradford, phase 2 interview)
While some patients experienced improved support, or at least understanding from their GP, this increased awareness of their condition was not consistently regionally/nationally consistent. According to a GP we interviewed, this discrepancy may be attributed to the lack of “systemic training and knowledge” about LC, especially during the early days of the pandemic, for primary care practitioners. In other words, whether and how to support LC was often dependent on practitioners’ own wishes/opinions/understandings. As a result, a contrasting picture was observed, with a few patients reporting improved primary care while many others still found the improvement limited. Craig shared that although his GP acknowledged his LC symptoms, she tended to be "reactive" rather than "proactive" in providing support.
Craig: “She took note of it [LC], obviously, we’d had it– but didn’t prescribe or didn’t expand on the conversation. She was just more reactive as opposed to proactive on it.” (Male, White British, 52, Scotland, phase 2 interview)
This ongoing inadequacy and disparities in LC support from primary care may contribute to the exacerbation of people’s worries and even desperation. During our phase 2 interviews, some participants expressed the sentiment that “there is nothing they [GPs] can do”, with a few opting to forgo primary care in favour of alternative forms of support.
Theme 1 summary
In our study conducted in 2021–2022, we identified barriers in LC primary care, referred to by one participant as "de-personalisation". While this phenomenon was not unique to primary care and was also observed in secondary and specialist care settings, it was particularly significant as it created a sense of being overlooked at the gateway to health systems. Many of our participants with prolonged and often 'mysterious' LC symptoms faced various hurdles in accessing primary care for initial clarification and support. Even for those who were able to gain access, they found limited understanding and support from practitioners, who serve as the first point of professional healthcare. This served to further illegitimatise their experiences and failed to validate their suffering. Despite ongoing efforts to improve LC support in primary care, the continued uncertainties around the condition seemingly caused significant emotional distress, including frustration, anxiety and fears, related to both healthcare access and their illness trajectories. Our participants often likened the unequal improvement of primary care to a "postcode lottery", which further amplified the uncertain nature of their healthcare experiences.
Failing to meet the individual and relational needs of LC sufferers in primary care may have further implications for their existential needs. The multifaceted and continued uncertainties they face may hinder their ability to access clinical and social support to make sense of and adjust to this novel health condition. These experiences can be particularly existential, as exemplified by Susan's concerns about her shattered health and future due to the lack of access to healthcare. Without sufficient clarification and reassurance from trusted medical resources, LC sufferers may struggle to retain meaning and purpose as they try to integrate their illness into their ongoing life34.
Theme 2: complexity in navigating secondary care
Specialised but fragmented care
Secondary care, compared to primary care, tended to provide more specialised support for many of the often complicated symptoms faced by LC sufferers. However, due to the limited availability of secondary care and the ongoing issues around access to primary care, only 17 out of 80 participants had access to secondary care in phase 1 (e.g., for cardiological, respiratory, neurological and mental health complications). In phase 2, the situation remained largely similar, with 14 participants being discharged due to improved conditions while 5 more with worsened symptoms were being referred to secondary care. While these participants appreciated the targeted care they received, they also felt that the highly specialised nature of secondary care sometimes could restrict their chance to access more holistic and integrated care. Lucy found her fatigue and brain fog symptoms were not adequately addressed by varied specialists:
Lucy: “The thing I found the most difficult about the healthcare system is that they don’t see things as a round so that you know you kind of go and see a few different specialists and one’s looking at your lungs, and one’s looking at your head, and one’s looking at your heart but nobody’s pulling all together and sitting down and going, this is what we think it is this, or what, you know there’s no, you’re not really sure what the journey is or what they’re trying to find out or what, what the conclusion is.” (Female, White British, 30s, London, phase 1 interview)
The above situation was not particularly better in phase 2 as Lucy and her peers still struggled to access what she described as ‘holistic care’. This over-specialisation could also be attributed to a lack of communication across healthcare settings. A GP reported her frustration, saying, “I want to know as a GP that my patients have been worked up for properly. I have to ask secondary care [for updates] because it’s out of my hands”.
The inconsistency within and beyond secondary care for LC sufferers could also cause frustration. In our study, only a few participants, such as Heather, who had a certain level of healthcare knowledge and communication skills, could navigate the highly specialised and fragmented care systems, often employing extreme persistence at the cost of becoming known as “infamous”:
Heather: “I phoned [hospital A] the next day because although it's another hospital called [hospital B] in [location C], it was through [hospital A] that I had to try and weave my way through. And thankfully, I'd taken so many phone numbers when my husband was at [hospital A], I managed to go through to a specialist and say, ‘I can't get through to your booking clerk, but I need to do this’, and because we're infamous now I think, [laughs], I managed to get – she got me an emergency appointment for the afternoon.” (Female, White British, 60s, Southwest, phase 1 interview)
Heather’s situation in phase 2 was “slightly better but not significantly”. After enduring prolonged struggles while navigating secondary care and beyond, Heather expressed that “they [healthcare professionals, such as specialists, paramedics and receptionists] seemed to be like cogs working in different directions”. This disintegration of care provision was not unexpected to our participants working in secondary care. A respiratory consultant highlighted that "this is not just a problem for Long COVID, but a broader issue" due to a lack of funding and staff.
Importance of being in the system
Despite the barriers to accessing holistic and consistent secondary care, our LC participants predominately emphasised the importance of being in the healthcare system (particularly secondary care after GP referrals). Those referred/admitted to secondary care (e.g., hospitalisation, specialist care), often had positive healthcare experiences. For instance, Patrick entered secondary care via hospitalisation for his acute COVID-19 symptoms. Whilst he had to wait for and navigate various specialist care pathways over a lengthy period after hospital discharge, he still found the support he received “helpful” for his LC recovery:
Patrick: “They [the hospital] were very supportive – after I left hospital there was in total about seven or eight months of follow-up support. I had the general nurse, the general consultant because they were worried about strokes and they were worried about sorts of different things, neurosurgeon, a lot of different people doing bloods. So I had to have the different people signed off and occupational psychiatry had to sign me off etc. So bit by bit they all signed me off until I got out and then even thereafter each function needed to monitor you afterwards. So I had a lung specialist because my lung was damaged. I had a haematologist, so different functions… Definitely, I mean the support helped me recover.” (Male, British Indian, 51, London, phase 1 interview).
Such support in secondary care was afforded by concentrated resources and the highly specialised nature of treatment, ensuring patients are “healthy enough” to be discharged and referred back to primary care9. Therefore, many of our participants determined to enter the specialised secondary care system. This struggle was particularly evident in Gemma’s persistence, expressed across the two interviews, as she wanted her “Long COVID to be logged in the NHS” for referral and further examinations/treatment of her multisystemic symptoms of fatigue, pain and sensory issues (Female, white British, 63, Southwest).
These attempts to enter and move forward through the system however were often obstructed by barriers in secondary care, and sometimes connected to primary care, reflecting broader issues in the UK public healthcare system. A practice manager reported ongoing efforts to clear referral delays at her hospital over the two interviews, highlighting both the healthcare access barriers and the impact on the wellbeing of LC sufferers:
“Sometimes there’re delays in getting the bloods and things like that, I think there is a huge barrier to people even getting an appointment with their GP to get referred and I think that can lead to a lot of helplessness and hopelessness for people like, what’s the point and will I get any help anyway? That’s a huge barrier, I hope that people know that widely in society what’s available and I think the challenge is each local commissioning area have a different pathway.” (Practice manager, Bradford, phase 2 interview)
Increased challenges to address blurred boundaries between LC and other health conditions
Secondary care faces ongoing challenges due to the novel and rapidly evolving symptoms of LC. Our conversations with participants during 2021-22 revealed that LC symptoms often develop alongside other pre-existing health issues, creating complications that can be challenging to address even with highly specialised care. Some interviewees expressed frustration with the lack of adequate support available to manage their LC symptoms alongside other health concerns. For example, Linda's hospital admission, reported in her phase 1 interview, was unable to determine whether her throat problem was related to LC or another underlying condition. In the second interview, she continued to express her concerns about changing LC symptoms and her desire for more specialised/personalised healthcare.
Linda: “Obviously, symptoms are still coming up and changing, so it’s not that you’re living with long term symptoms that are the same, that actually symptoms are changing, and new symptoms are coming along it feels like, that weren’t there a year ago, which is very odd… That’s why you want to get to be seen [by specialists], so if they start to see something worrying coming out, that you’re on a list somewhere. At the moment I don’t feel I’m on a list anywhere of people that are suffering from this.” (Female, white British, early 30s, West Midland, phase 2 interview).
The above accounts highlight the importance of healthcare providers recognising and addressing the interconnected nature of LC symptoms and other health issues for more effective care. However, the specialised focus of secondary care could sometimes lead to exclusion from the system due to the largely underexplored nature of LC. Penny was one of those who was already ‘in the system’ due to pre-existing health issues, but had to re-enter specialist care via the aforementioned challenging primary care routes for her LC-related symptoms that intersected with her previous conditions:
Penny: “Like my rheumatoid I know when I’m having a flare up, I visit the consultant and I have a good back up with the rheumatoid team. If I’m having a flare up or something’s wrong, I know that I phone up, the rheumatoid team and they help me and they support me… The thing [joint pain] with Covid is basically I don’t know what I’m supposed to be looking for and nobody’s actually said anything, so I get confused sometimes when I feel ill, I don’t think of Long Covid and just think, oh maybe I’ve got a chest infection or something else. Then you go to your GP and they say Long Covid and then you don’t know what it is.” (Female, white British, 63, Wales, phase 2 interview).
Theme 2 summary
The findings above illustrated the challenges faced by our LC participants while navigating accessing support for their complex symptoms within the complicated secondary care system. While primary care serves as the gateway to the health system, secondary care is where individuals seek improvement, if not full recovery, of their medical conditions5,9. As demonstrated earlier, the lack of holistic and consistent support in specialist care could undermine not only the physical wellness of people with LC but also their overall well-being, affecting them emotionally, socially, and even financially (e.g., loss of employment) in an ongoing manner. These prolonged struggles could be attributed to small amount of progress offered/gained from secondary care, gradually eroding people’s hope to recover through receiving specialised (often as perceived ‘more advanced’) support. Such experiences in secondary care might have an existential dimension, as captured by Dorothy’s reflections on her vulnerability and even mortality in phase 2 interview: “this is the final curtain, this is the last, ‘cos you think, well this isn’t getting any better, I don’t know what this is” (Female white British, 63, Southeast).
Being “in the system” was essential for our participants access to various specialised medical resources, but the challenges persisted in supporting LC as a novel condition within an already strained healthcare system. Therefore, both LC sufferers and practitioners emphasised the importance of more integrated/person-centred support for LC complications moving forward.
Theme 3: unique challenges to propagate LC integrated care pathways
Yet limited coverage
To improve the well-being of people with LC, a number of integrated care pathways have been established across the UK since December 2020, including Long COVID clinics in England and similar services in Wales, Scotland, and Northern Ireland30. The purpose of these dedicated care pathways is to provide more personalised care, addressing the multifaceted challenges (e.g., physical, mental and social) individuals face during their LC trajectory. However, our study found that these pathways were largely unknown and challenging to access for people with LC. In phase 1, only 4 out of 80 participants had accessed LC clinics through GP referrals, and this only increased to 5 in phase 2. A major contributing factor to this issue was the prevalence of barriers encountered when trying to enter and navigate healthcare systems. For example, Christine had initial difficulties accessing her GP and faced a lengthy process of medical examinations before being referred to a LC clinic (female, white British, 51, Southeast). By her second interview, she had been on the LC clinic waiting list for over a year, despite her proactive efforts to communicate with her GP and the clinic.
The limited coverage also lied in a lack of awareness about LC integrated/specialised care. Approximately one third of our participants with LC in phase 1 had never heard of LC clinics or other similar services. Despite being provided with information about the integrated care pathways, many participants’ knowledge remained largely limited in phase 2. This was due to the scarcity of publicly accessible information about the specialised services and difficulties in accessing them (or the healthcare systems more generally):
Malcolm: “I haven’t heard about a Long COVID clinic or something like that in this area if there was something I think she would have said, or if you could see, the nurse would have said, do you want to go to a clinic? But there’s nothing.” (Male, white British, 75, Wales, phase 2).
As seen above, inadequate information for primary care practitioners was another contributor to the limited access to LC integrated care pathways. This issue was reiterated by a GP who had to rely on her patients for information about the support offered in LC clinics:
“I was relying on my patients, I was like, tell me what the Long COVID clinic is like and come back to me. And then I can tell the next person”. (General Practitioner, Bradford, phase 1 interview)
The situation improved in phase 2 interview as this GP could access notes via NHS systems from the LC clinics about support details for her patients, but she still struggled to stay updated on the fast-evolving LC care pathways due to a lack of direct communication from the local LC clinics.
Tendency to develop a pathway towards holistic and consistent care
A rapidly evolving picture was captured across the two phases of interviews, highlighting how LC integrated pathways were developed from initially highly specialised medical care (e.g., often centred around respiratory care) towards the provision of increasingly holistic support. In phase 1, two out of the four participants who reported having access to LC integrated care pathways, found that LC clinics tended to "apply existing medical models to a new illness", be "led by respiratory specialists", and "focus on 'clinically severe and visible' symptoms" (e.g., organ damage, lung issues). One of them, Lucy, called for a “One-Stop-Shop” for more integrated and holistic care:
“A one-stop-shop where you can, say, ‘this is Long COVID, this is what people have experienced, this is what doctors can do, this is what they can’t do, this is what people have found helpful, this is what’s available’ would be really helpful. It just seems so random, what people are getting, what people aren’t getting.” (Female, White British, 30s, London, phase 1 interview)
While acknowledging the heavily clinical focus of LC care pathways, practitioners also emphasised the evolving support for the holistic wellbeing of people with LC. In phase 1, a LC clinic coordinator reported the development of a comprehensive psychology-led course to empower patients to better identify their needs and manage their symptoms. Notably, there were further enhancements addressing existential needs during phase 2. A hierarchical framework of identity roles was adopted to address patients' awareness of identity loss and mortality to (re)develop a ‘flexible and resilient self’, assisting them in prioritising the recovery of their primary identity and well-being.
Improvements can also be observed in service providers' efforts to offer follow-up care that specifically addresses the fluctuating nature of LC symptoms. For instance, the previously mentioned care pathway coordinator discussed the potential for self-referral to the LC clinic. Similarly, a rehabilitation coordinator introduced their plan to implement 'Patient-Initiated Follow-Ups’ to empower patients to play a more active role in seeking specialised care consistently, while acknowledging their limited capacity:
“What we’re just at the point of starting to offer are the Patient Initiated Follow-Ups, so once they’ve been through the groups that we feel have been appropriate and they’ve gone through them all once, it’s then about some sort of self-management and then offering them to say, right okay, see how you go on. If you feel you need to come back to us, you initiate another follow-up with us. But as I say, we’ve still got patients working through and we aren’t quite yet. We haven’t got a massive group of patients at that level at that point of being able to do that, but that’s out intention.” (Rehabilitation coordinator, Bradford, phase 2 interview)
Uncertainties in funding security
Positive changes in LC care pathways were indeed observed over the 2021–2022 two interview rounds. However, significant uncertainty lingered regarding funding sustainability for specialised care for this persistent condition. This uncertainty was not unique to LC specialized care but reflected broader NHS resource challenges, with stretched and fragmented resources10,28.
Healthcare professionals in Bradford voiced concerns about long-term funding. Almost half of them noted how funding constraints affected daily operations, service reach, capacity, and future planning for LC specialised services. A manager for specialised medicine highlighted the persistently limited availability of funding for expanding and even maintaining the services. In phase 1 in early 2022, she underscored the challenges of prioritising funding over the LC patients’ real needs, further creating a highly uncertain future for service provision:
“All these patients, that we’ve just talked about ending up within the community and getting referred back in, they’re not funded. We haven’t got any funding for increased activity related to Long COVID. We’ve got at the moment recovery money which means we can put on extra activity and have extra sessions for the consultants that can be funded. But long term it’s very difficult to predict how long this is going to go on for. We keep stopping and starting activity depending on spikes, so we don’t know what our backlog is going to look like and we don’t know what the long-term implications are going to be.” (Specialised medicine manager, Bradford, phase 1 interview)
In the second interview in late 2022, the situations had not improved and, in some cases, had deteriorated. Both this manager and other service providers highlighted the potential for long-term funding insecurity to disrupt LC specialised care in a multitude of ways, affecting staff retention, consistency and coordination:
“It is and it’s much harder to recruit to temporary contracts and secondment, it’s destabilising for the service where you take the person from because it’s really hard for them to fill that vacancy… we are three separate Trusts working together and it’s quite complicated then because each Trust has their own policies and procedures that aren’t necessarily the same. Everyone still has a contract with one Trust. So does that person just follow those procedures from their Trust which might be different from their colleagues procedures, so those things are quite challenging.” (Project manager, Bradford, phase 2 interview)
The funding uncertainties prompted some 'creative' approaches to sustain LC specialised care within the constrained financial parameters. Some practitioners disclosed plans to secure additional funding. Some other managers and commissioners also deliberated the possibility of integrating LC specialised care into existing post-viral/chronic illness pathways, aiming for more consistent and potentially comprehensive care (e.g., drawing lessons from other health conditions).
Theme 3 summary
Theoretically, specialised healthcare aligns well with the philosophy of person-centred care, as both emphasise the importance of tailoring treatment and care plans to meet patients' specific and holistic needs23. While the specialised pathways showed some improvements towards a more holistic approach to LC, significant gaps persist. These gaps hinder the integration of LC specialised care into the healthcare system to address LC's multifaceted and persistent nature effectively. These gaps primarily result from limited access to LC specialised care, driven by funding insecurity and subsequent workforce shortages, often intertwined with issues in primary and secondary care systems. This fragmentation was exemplified by the experience of Lucy (Female, White British, 30s, London), who initially received physical therapy from a LC clinic but faced discontinuation and challenges accessing follow-up support within primary and secondary care systems.
Healthcare is comprised of various systems, including primary (community), secondary, and specialised care, with LC specialised care aiming for patient-centred treatments and support. However, interconnected challenges with other healthcare systems (e.g., primary and secondary care) could often lead to an unstable, fragmented, and overstretched healthcare system, making it challenging for people with LC in the UK to navigate and utilise effectively.