Discussion

To our knowledge, this study is the first to explore the lived experience of individuals with confirmed or suspected COVID-19, during the acute phase of infection. Varying symptom profiles and a lack of knowledge and evidence of effective treatment strategies meant that some patients were left to convalesce in community settings with an apparent lack of access to medical care and support services. It is acknowledged that health services were placed under unprecedented strain at various times throughout the pandemic, which resulted in patients being left feeling stranded and even worrying if they were going to survive. Although the circumstances were unprecedented, this study highlights the perceived inadequacy of management and support when requiring medical assistance and reassurance.

Over half of the participants in this study believed that they did not receive adequate care in the acute phase of infection, with patients being sent home from the hospital and in some cases not being able to be admitted to the hospital due to services being overburdened. Data here provide a novel insight into the patient perspective, which adds a different dimension to the findings that have been published by those working in frontline health-care settings. ^{Reference Eftekhar Ardebili, Naserbakht and Bernstein27,Reference Vindrola-Padros, Andrews and Dowrick28} The sample of the current study is made up of 88% of individuals who were not hospitalized; however, open text responses such as “Hospital full so advised to recover at home”, “Advised that under normal circumstances they would have taken me to hospital” and “I was told I would be safer at home than in hospital” suggest that this may not be because all individuals had mild symptoms, but because medical support was not available due to capacity issues. Although participants referred to the “novelty” of the virus, existing research states that the nature of pandemics makes them unpredictable, and sufficient planning and preparation can support their management. ^{Reference Stenseth, Dharmarajan and Li29} When considering these findings, it is important to be mindful of the pressure on frontline health-care workforces who worked tirelessly out of routine, often with inadequate personal protective equipment (PPE), were commonly redeployed and suffered mentally. ^{Reference Eftekhar Ardebili, Naserbakht and Bernstein27,Reference Vindrola-Padros, Andrews and Dowrick28,Reference Fearnley and Qureshi30} To be clear, the question of preparedness is not solely aimed at health-care organizations and their staff as this must include a whole-systems viewpoint and consider the relevant and necessary stakeholders that are involved in the decision-making relating to planning, funding, and organization.

Furthermore, the Independent Panel for Pandemic Preparedness and Response reported that the global COVID-19 pandemic “was a preventable disaster, with weak links at every point in the chain of preparedness and response”. ³¹ Specifically, the panel reports that years of warnings highlighting an inevitable pandemic that threatened public health were ignored, and when the Public Health Emergency of International Concern was declared, a “wait and see” approach was widely adopted, compounding the inevitable global health disaster that unfolded. An aggressive containment strategy that may have prevented the global pandemic ³¹ could have resulted in improved patient outcomes and health-care experiences for all patients. The continued disregard and absence of political leadership had a major impact on the global response to the pandemic, ³¹ in addition to several other factors contributing specifically to the UK’s response. ^{Reference Faghy, Arena and Hills32,Reference Gaskell, Stoker and Jennings33} These factors include the decision to delay the implementation of lockdown procedures; shortages of PPE for frontline workers; an insufficient number of ventilators; confusion in communications to the general public; and an improper track and trace system, all undoubtedly contributing to the experience described by the participants in this study. Consequently, the UK Government has launched a COVID-19 Public Enquiry, which is ongoing and due to share its findings by 2024.

This is reinforced by public health-related decisions that have seen access to free testing removed despite widespread community transmission which continues to result in hospital admissions. There are also no planned clinical assessments or follow-ups for patients with COVID-19, ^{Reference Goyal, Mansab and Naasan34} which is partly caused by deep and systemic backlogs across the health-care system. As of September 2023, it is estimated that 7.1 million people are waiting for routine treatments from the UK NHS with those living in the most deprived areas adversely impacted by these waiting lists. ^{Reference Morris, Schlepper and Dayan35} Additionally, the lowest level of patient satisfaction with health services in the United Kingdom has been recorded, with 51% of respondents to the Kings Fund survey dissatisfied with their experience and/or treatment. ^{Reference Morris, Schlepper and Dayan35} Furthermore, the strain on staff from responding to the pandemic is alarming and has resulted in greater sickness absences than before the pandemic, ¹⁹ as well as ∼110,000 job vacancies across the health-care sector, with thousands more in primary care. ^{Reference Deakin36} Subsequently, only 27% of staff within the health-care services believe that they can do their jobs properly, ^{Reference Deakin36} which is concerning for patients receiving care. This may be represented in the drop in public satisfaction with the health-care service ^{Reference Morris, Schlepper and Dayan35,Reference Wellings, Jefferies and Maguire37} and is further evidenced in our findings. As understood among the participants in the present study, a novel virus allows for a reasonable understanding of restricted access to health care during a pandemic; however, the continuation of the UK’s health-care restrictions is alarming, and unknown future variants ^{Reference Fontanet, Autran and Lina38} and long COVID pose a further threat to the health-care sector.

Infection associated with chronic illness is common following viral/fungal infections where a sub-set of patients develop chronic and persistent symptoms, ^{Reference Islam, Cotler and Jason39,Reference Prasso and Deng40} and this includes persistent symptoms following a COVID-19 infection. In the United Kingdom alone, an estimated 2 million people are living with long-term, disabling, and episodic symptoms that present as a complex clinical manifestation, affecting multiple body systems ⁴¹ which broadly impact functional status and quality of life and can persist beyond months postinfection. ^{Reference Faghy, Owen and Thomas3,Reference Faghy, Maden-Wilkinson and Arena42–Reference Owen, Ashton and Skipper46} Although the long-term consequences are outside the scope of the current study, it must be acknowledged that the impacts that have been documented here have the potential to exceed the acute phase of infection and widely impact population health and wellbeing.

Our study highlights the impact on individuals suffering from varying symptom profiles during the early stages of the COVID-19 pandemic and raises alarm about the initial response to the pandemic within the United Kingdom, much of which was mirrored globally. Although this survey took place in the United Kingdom, the relevance of these data and the contextualization in terms of pandemic preparedness and long-term impacts is likely relevant globally. Future pandemics are inevitable and expected to occur more frequently. ^{Reference Haileamlak47} Thus, health services must be able to prepare for well-timed action and mitigation strategies to prevent the catastrophes that have occurred following the outbreak of COVID-19, and to ensure medical intervention and care are available when needed, even in less critical cases. Furthermore, Coccolini and colleagues ^{Reference Coccolini, Cicuttin and Cremonini48} state that resilient health systems must be built as part of pandemic preparedness, to promptly detect, assess, report, and respond to novel outbreaks. Pandemics cannot be controlled by science alone, with management requiring an integrated approach coordinating science, public outreach, and policy-makers to improve the control of public health emergencies. ^{Reference Stenseth, Dharmarajan and Li29}