‘I don't know what to do or where to go’. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: A qualitative study in Bradford, UK

Abstract Background In October 2022, it was estimated 2.3 million people in the United Kingdom have self‐reported Long Covid (LC). Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in‐depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC. Objective To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC. Design and Participation 40 interviews were conducted with people living with LC in Bradford alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford healthcare settings. Interviews were analysed using reflexive thematic analysis. Results People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorized the healthcare access experiences of participants into five main types: (1) being unable to access primary care, (2) accessing primary care but receiving (perceived) inadequate support, (3) extreme persistence, (4) alternatives to mainstream health care and (5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macrostructural issues further exacerbated by the pandemic. Conclusion To better support people with LC, the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to general practitioner access are required; especially as GPs are the first line of support for people living with LC. Patient and Public Involvement A patient and public involvement group is engaged at regular intervals in the project.


| INTRODUCTION
Long Covid (LC) is a rapidly emerging medical condition that first drew headlines nationally and internationally in 2020. 1 In the early stages of the pandemic, many medical professionals and patients reported being neglected or disbelieved about their persisting COVID-19 symptoms. 2,3 Thus, they mobilized online via social media to create awareness of their condition. As such, LC is believed to be the first illness constructed by patients. 2,4 Despite the increasing prevalence of LC, its definitions remain vague and are continuously evolving. Adopting the WHO definition, NICE states that the term LC 'is commonly used to describe signs and symptoms that continue to develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more)'. 5,p.5 Post-COVID-19 syndrome is described as presenting with a cluster of often overlapping symptoms which fluctuate, change over time, affect any system in the body 5 and impact 'everyday functioning'. 6,p.674 Symptoms of LC include breathlessness, fatigue, cough, fever, neurological symptoms (such as loss of taste and smell and brain fog), skin rash and chest pain. 7 There has been an increasing emergence of academic studies exploring LC and the medical and social impacts it has on people's lives. [7][8][9][10][11] The United Kingdom has universal healthcare provision, which is free for most at the point of delivery. 12 However, barriers to access are impacted by a healthcare system which has faced years of austerity, budget caps, increasing waiting times, pressurized services, backlogs and workforce shortages. 12,13 This has been further exacerbated by the pandemic, consequently impacting people's ability to access health care. COVID-19 has been said to have created a 'perfect storm' 'interacting with and exacerbated by social, economic and health inequalities'. 12,p.3 The pandemic has further intensified health inequalities, and existing chronic health and social conditions. 12 Healthcare services are fragmented, with patients transitioning between multiple care pathways; often, patients consult with GPs who act as gatekeepers to other specialist services. 14,15 Given the complexities and uncertainties surrounding the diagnosis, treatments and impacts of LC, it is expected that it may become a burden upon the healthcare system. 16 Although some studies and commentary pieces have touched upon LC patients not being believed by healthcare professionals (HCPs) leading to them managing symptoms alone, 7,8 and the importance of relationship-based care, 17 there is less critical analysis of nonhospitalized people's experiences of not being able to access adequate healthcare support. 7 Moreover, there is a lack of interpretative studies that embed ethnic minority and/or socioeconomically deprived LC patients' experiences of health care within the wider structural impact the pandemic has had on the National Health Service (NHS), health inequalities and consequently, how this shapes access to healthcare services. This paper will present findings from the Bradford sample of a national qualitative study. The aim of this paper is to understand healthcare access for people living with LC. Bradford is a city in the North of England with high levels of deprivation, poverty and health inequalities. 18 As such, we engaged with a socially and ethnically diverse sample. Bradford experienced a high number of COVID-19 cases compared to the rest of the United Kingdom. This was cited as 'likely to be due to greater deprivation, high population density and a higher-thanaverage number of multi-generational households'. 19,p.1160 Furthermore, it has been found in racial disparities report that ethnic minorities have been overexposed to and underprotected against 21 People from deprived localities are also more vulnerable to COVID-19 infections, both groups could disproportionately experience LC. 8 Sampling purposively, we aimed to oversample ethnic minorities and those living in medium to high deprivation, using postcode and IMD score as a proxy for deprivation status. We approached people with a range of engagement with healthcare services and considered the severity of LC (mild to severe self-defined symptoms). BiB cohort participants were largely in their 30s and 40s. Twenty-one participants were drawn from the BiB cohort identified via a recurrent cohort survey. From February to August 2021, survey respondents had been asked if they had COVID-19 and how long their symptoms lasted, with four options to choose from. Reflecting the literature at the time, although there was no firm definition of LC, it was understood to be defined as having persistent symptoms for over 4 weeks. 9 Consequently, the main exclusion criteria were having symptoms of COVID-19 for 4 weeks or less. We sampled respondents who stated that their symptoms were either 5-12 weeks or over 12 weeks in duration. Once the list of potential 50 participants was generated by BiB, a research assistant called respondents, inviting them to take part. Twenty-eight were interested in taking part, the remaining 22 were either unreachable or not interested.
Information sheets and consent forms were then sent out. The first author arranged the interviews. Out of the 28, 7 did not participate either because they were no longer interested or there were already enough female participants in the study, prompting us to recruit more men outside the cohort. 19 people were recruited outside the cohort through community workers and snowball sampling. Another three were approached but were not interested in participating or did not reply to correspondences. Those embedded in community settings had established trust and rapport with local people, which allowed for a diverse range of respondents to be approached. 19 Snowball sampling was used to take a more targeted recruitment approach and engage with underserved groups, for example, those whose first language is not English and men.
Participants were predominantly female, reflecting there being more mothers registered in the BiB cohort than fathers and females being cited as having a higher risk of developing LC. 22

| Analysis
A reflexive thematic analysis approach was taken. 23

| Experiences of accessing healthcare
We found five main types of experience that participants discussed when accessing or trying to access healthcare support for LC. First, some people with LC were not able to get through to primary care and were not able to secure a general practitioner (GP) appointment.
Second, many were able to access primary care but did not receive (perceived) adequate support from either their GP or secondary care.
Third, a small group of participants who were extremely persistent in their interaction with health care sought LC support. Fourth, a group used alternatives to accessing mainstream health care for various reasons. Fifth, a small number of people had positive experiences.
We also discovered a severe lack of access to specialist LC clinics. At the time of fieldwork, a newly set up LC clinic aimed to provide holistic care to Bradford patients taking a multidisciplinary approach, which is particularly key as LC is often seen as a primary respiratory phenomenon. The main barrier to accessing this clinic was the long waiting list. HCP10 (a lead clinician) stated that the clinic was 'lagging behind' due to the time it had taken to set up and allocate funding. Additionally, there has been a struggle to recruit staff due to shortages of specialist staff, a wider system issue which is also impacting this service. 13 Although HCPs felt that GPs were best equipped to support LC patients, as they had knowledge of the whole body, a CEO of a thirdsector organization working with health services raised the concern of accessing the clinic via GPs, the primary route of referral. insights about mistrust. We found five different types of experience when accessing health care alongside a lack of access to LC specialist services. Overall, it is evident that people faced worrying difficulties in accessing the healthcare system at all, with a high degree of persistence required just to access primary care. 29 As found in previous studies, there were some positive experiences of primary care, such as GPs following up and listening, 11 but many participants felt that their symptoms were not taken seriously. 28 People who were referred to secondary care had to wait many months to access services. Only 1/40 of the interviewees had accessed a multidisciplinary LC specialist service, with a few people discussing the possibilities of future referrals with GPs.
It is important to embed these experiences in literature from an inequality and structural lens, given COVID-19 and LC being both a health and socioeconomic crisis (often termed a 'syndemic pandemic') and experiences of access being shaped by inequalities and structural factors. 12,21 As previously argued, 7 the sociological theory of candidacy, which describes how eligibility for care is jointly negotiated between individuals and health services, is useful here in contextualizing experiences. 29 It is acknowledged that access requires considerable work by users and is argued that a number of factors, such as those at the material, structural, cultural, professional and individual levels, can shape the views of the most disadvantaged BAZ ET AL.
| 549 as to whether they are eligible for care. 29,30 Access to health care is lower in disadvantaged and deprived communities, with the number of patients per GP higher in the most deprived areas than in the leastdeprived. 12 This results in reduced access to health care, further creating a bottleneck for people with LC. This can further contribute to inequalities and lead to worse health outcomes from LC for the most disadvantaged. 12 Similar to previous studies on LC, participants in this study were having to still do the 'hard and heavy' work of both understanding and managing a new illness and navigating fragmented healthcare services. 8,11 Moreso systemic barriers, including backlogs, a decimated and underfunded healthcare system and workforce shortages, mean people with LC experience barriers to access. 7,15,31,32 Furthermore, this research adds further to emerging literature surrounding COVID-19, ethnicity and mistrust amongst ethnic minorities. 16,19,33 In relation to accessing LC support, experiences This creates an additional barrier to accessing healthcare support for LC amongst ethnic minorities.

| Implications for practice
Evidently, GPs are often the first point of contact for patients and play a crucial role as gatekeepers in facilitating access to secondary care and LC clinics and assessing patients. 15,25 Therefore, it is essential to improve access to primary care so people with LC are provided with better support and referral. Our study shows that this is a major barrier for LC sufferers, this was emphasized by both people with LC and HCPs.
A backdrop of mistrust exists, this must also be addressed when looking at access to and engagement with healthcare services, particularly as Bradford has a diverse ethnic minority population and socioeconomic inequalities, which have led to greater risks of contracting COVID-19.
Although progress has been made in setting up an LC clinic, HCPs cited the structural barriers in the healthcare system which impacted their ability to provide support to LC sufferers. As previously cited, 14,28,35 better communication between fragmented services is required so GPs can provide better follow-up support, alongside more training and education for HCPs about LC. Wider systemic issues routed in years of austerity are evidently also impacting access and service delivery. There is concern that not everyone is able to seek help in an overwhelmed system.

| Strengths
Earlier studies into LC focused predominately on White British populations, and HCPs with LC, and recruited participants from online platforms. 3,7,25,36

| Limitations
We do not have 'evidence' of COVID-19 infection for some participants, particularly those who were infected during Spring 2020 when testing was largely unavailable. The severity of LC was also self-defined by participants. These could be viewed as

| Further research
Our study is the first sweep of data collection of a three-sweep longitudinal interview study, where we will follow participants both in Bradford and across the United Kingdom over three time points over an 18-month period. As this paper only presents the Bradford sample, we do not situate our current data as longitudinal or nationally representative. However, it is worth noting that in future publications, we will explore varying topics of importance to participants (such as LC, identity and existential loss), changes over time and whether participants have engaged with and accessed further healthcare support.

| CONCLUSION
This paper has contributed to providing a more nuanced and in-depth understanding of the barriers and 'hard and heavy work' 8  Over the course of the project, we will inform you about outputs from the project. I will also be in touch around May 2022 to arrange the second interview-I will be in contact closer to the time.