A researcher is calling on the government to provide dedicated funding for long Covid. Photo: Vinay Ranchhod
A researcher into long Covid says the healthcare system is failing long Covid patients.
University of Otago researchers interviewed 18 people suffering from long Covid in 2023 and 2024 about their experiences accessing primary healthcare as part of a study.
Lead author Dr Sarah Rhodes, of the School of Physiotherapy, said some patients felt they were being let down.
"Covid-19 may no longer be considered a public health emergency, but long Covid presents an ongoing and complex challenge for those affected. People are really struggling with their loss of physical capacity, the impact on their mental health, but more broadly the loss of capacity to work to the full extent and the financial implications of that, so for some people that's been loss of home," she said.
"Patients accessing the current system experience gaslighting, unmet needs, inequity of care and uncertainty amongst health providers about their condition. This has left them having to self-advocate which often comes at a high personal and financial cost."
University of Otago said participants told the researchers: 'people don't believe us'; 'I've tried over 20 different forms of treatment and therapy'; and 'I almost wish I'd been in a car accident because then at least I would have some support'.
Rhodes said with few publicly funded long Covid clinics, most people relied on their GPs as their first point of contact.
"This, perhaps unfairly, places the burden of care on an already under pressure primary care system. The issue is further compounded by the absence of any additional funding or training," she said.
Rhodes told Nine to Noon that she wanted to see more public awareness of long Covid and the toll it took on people.
"People are desperate. They're living with the onset of this disability. They are really struggling to gain any traction within the health service. They feel quite unsupported, a lot of their needs are not being met and there are quite clear inequities of care," she said.
"The continued gaslighting, which I find really hard to fathom six years on there are still people that don't believe Long Covid is a condition, and the invisibility of those symptoms plays into that," she said.
The inequities were apparent not just between cities and rural areas, but also between practitioners in the same city, who might not be aware of long Covid or the right pathways through the health system, Rhodes said.
Rhodes was calling on the government to provide dedicated funding for long Covid.
"Investment is needed at every level - digital infrastructure, upskilling of health staff, and expanding the allied health workforce. A lack of action risks increasing the health and economic burden of long Covid, as well as perpetuating health inequities," she said.
Other recommendations from the study included creating physiotherapy-led long Covid clinics for those with common symptoms such as post-exertional malaise and breathing pattern disorders, creation of a public awareness campaign to better support self-management of those living with long Covid where possible, and for primary care providers to increase the use of remote care in addition to face-to-face services to reduce inequities.
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