Patients with long COVID in Aotearoa New Zealand are facing significant challenges within the healthcare system, leading to feelings of being let down and unheard. A recent study from the University of Otago highlights the struggles of these patients, who report experiencing gaslighting, inequity of care, and a lack of understanding from health providers. This situation has forced many to become their own advocates, a process that is often costly and emotionally draining. The impact on their lives is profound, affecting their physical and mental health, as well as their ability to work, which in some cases has led to devastating financial consequences, including the loss of their homes.
The core of the problem lies in a healthcare system that is ill-equipped to handle the complexities of long COVID. The burden of care has largely fallen on general practitioners (GPs) and primary care services, which are already under immense pressure. While the Ministry of Health has established a long COVID program and an expert advisory group, there is a clear lack of formally coordinated care pathways at a national level. This gap in the system means that patients are left to navigate a fragmented and often unsupportive landscape, struggling to find the specialized, multidisciplinary care that their condition requires. Researchers and advocates are calling for urgent government intervention, including dedicated funding and a comprehensive strategy to address the growing health and economic burden of long COVID.
The Patient Experience
The journey for long COVID patients in New Zealand is often one of frustration and disbelief. Many feel that their symptoms are not taken seriously by healthcare professionals, leading to a sense of being “gaslit.” A study conducted by the University of Otago between 2023 and 2024, which involved interviews with 18 long COVID sufferers, brought these experiences to the forefront. Participants in the study expressed a deep sense of abandonment, with one individual stating, “people don’t believe us.” Another participant lamented the extensive and costly search for effective treatments, saying, “I’ve tried over 20 different forms of treatment and therapy.” The emotional toll of this struggle is immense, with some patients wishing they had been in a car accident instead, as they believe they would have received more support in that scenario.
This lack of belief and support from the medical community has a significant impact on the mental health of patients. In addition to the physical symptoms of long COVID, which can include debilitating fatigue, brain fog, shortness of breath, and loss of taste or smell, patients are also dealing with the psychological stress of having their experiences invalidated. The uncertainty surrounding the condition, coupled with the financial strain of being unable to work, creates a perfect storm of anxiety and depression. The result is a patient population that feels isolated and left to fend for themselves in a system that does not seem to understand or acknowledge their suffering.
Systemic Failures and Gaps in Care
Lack of Coordinated Pathways
One of the most significant failings of the New Zealand health system in addressing long COVID is the absence of a nationally coordinated approach to care. While the Ministry of Health has acknowledged the issue and established a long COVID program, this has not yet translated into clear, accessible care pathways for patients. As a result, the responsibility for managing long COVID has been largely delegated to primary care physicians, who are often not equipped with the specialized knowledge or resources to effectively treat the condition. This ad-hoc approach leads to significant inconsistencies in the quality of care that patients receive, with many experiencing unmet needs and inequities.
The Burden on Primary Care
The reliance on primary care to manage a complex, multisystem condition like long COVID is a major point of contention. GPs are already facing a strained and under-resourced system, and the addition of long COVID patients has only exacerbated these pressures. Dr. Sarah Rhodes, lead author of the University of Otago study, notes that this “unfairly places the burden of care on an already under pressure primary care system.” Without specialized training and support, GPs are often left to navigate the uncertainties of long COVID on their own, which can lead to frustration for both the doctor and the patient. This situation highlights the urgent need for investment in upskilling health staff and expanding the allied health workforce to create a more robust and responsive system of care.
The Wider Impacts of Long COVID
The consequences of long COVID extend far beyond the individual patient, with significant implications for the wider society and economy. The condition is associated with substantial productivity loss, as many sufferers are unable to work or have to reduce their hours. This has a direct impact on the workforce, particularly in sectors with high rates of COVID-19 infection, such as healthcare and education. The economic burden is further compounded by the increased healthcare costs associated with the investigation and treatment of long COVID.
Furthermore, long COVID has the potential to exacerbate existing health inequities. Structurally marginalized populations, including Māori and Pacific Peoples, are already at a higher risk of severe outcomes from COVID-19, and the long-term effects of the virus are likely to further widen these disparities. The syndemic nature of COVID-19, where it interacts with and worsens existing chronic diseases, means that those who are already disadvantaged by the social determinants of health are likely to be hit the hardest. This underscores the need for a targeted and equitable response to long COVID that addresses the underlying structural issues that contribute to health inequality.
The Path Forward
Calls for Government Action
In light of the significant challenges faced by long COVID patients and the healthcare system, there are growing calls for decisive action from the government. Researchers and advocates are urging the implementation of a comprehensive, multisectoral strategy to address the long-term impacts of the virus. A key demand is for dedicated funding to support the development of specialized long COVID clinics and services. This would help to alleviate the pressure on primary care and ensure that patients have access to the multidisciplinary care that they need.
Recommendations for a National Strategy
A 2024 evidence brief from the Ministry of Health outlines several key recommendations for developing a national model of care for long COVID. These include the creation of a cohesive national community of practice to connect specialists with primary care providers, as well as the development of a dedicated communication strategy to disseminate up-to-date information and resources. The brief also emphasizes the importance of improved data collection and the use of standardized assessment tools to better understand the prevalence and impact of long COVID. Finally, it calls for a national program of interventions that is co-designed with patients and tailored to the specific needs of local communities.
Ultimately, a successful response to long COVID will require a significant investment in both healthcare infrastructure and research. By upskilling the health workforce, expanding access to allied health professionals, and establishing clear and equitable care pathways, New Zealand can begin to address the unmet needs of its long COVID patients. Without a concerted effort to tackle this growing public health crisis, the country risks perpetuating the suffering of thousands and increasing the long-term health and economic burden of the COVID-19 pandemic.
