Experiences of accessing primary care by those living with long Covid in New Zealand: A qualitative analysis, 2025, Rhodes et al.

[Chandelier]

Experiences of accessing primary care by those living with long Covid in New Zealand: A qualitative analysis

Background Long Covid is the persistence of symptoms beyond 12 weeks following acute Covid-19 infection. It is estimated to affect one in ten people and can be extremely debilitating. With few publicly funded long Covid clinics, most people rely on primary care providers as a first point of...

journals.plos.org

Authors: Sarah Rhodes, Christina Douglas

Background​

Long Covid is the persistence of symptoms beyond 12 weeks following acute Covid-19 infection. It is estimated to affect one in ten people and can be extremely debilitating. With few publicly funded long Covid clinics, most people rely on primary care providers as a first point of contact. There is currently limited understanding of the experience of accessing primary health care by adults living with long Covid in New Zealand.

Purpose​

To explore the experiences of accessing primary health care by adults living with long Covid.

Methods​

A narrative inquiry approach was used to capture participants lived experiences of accessing primary health care. Zoom interviews and discussions were conducted with study participants. The automatically generated transcripts were reviewed and corrected, and the collated data were analysed using Braun and Clarke’s thematic analysis.

Results​

Eighteen people participated in the interviews. Codes were identified and, through an iterative process, themes were generated, reviewed, and named. The seven themes included lack of upskilling of primary care staff; let down by the Government; self-advocacy and its cost; and throwing money at it.

Conclusion(s)​

The picture painted by participants was bleak with a sense that the world had moved on from Covid-19 and left them behind, with some experiencing a lack of support in primary health care. Reducing the likely long-term health and economic burden of long Covid requires targeted investment and action by Government at every level, along with better utilisation of the allied health workforce in primary care.

 

[Chandelier]

Healthcare system failing long Covid patients – study finds

Gaslighting, unmet needs, and a sense of being left behind – long Covid patients paint a bleak picture of their experiences with the Aotearoa New

www.nationaltribune.com.au

Healthcare system failing long Covid patients – study finds​

• Education
• 6 Nov 2025 5:18 am AEST
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Gaslighting, unmet needs, and a sense of being left behind – long Covid patients paint a bleak picture of their experiences with the Aotearoa New Zealand health system in a new University of Otago – Ōtākou Whakaihu Waka study.

Published in PLoS One, researchers interviewed long Covid patients about their experiences accessing primary healthcare.



Dr Sarah Rhodes

Lead author Dr Sarah Rhodes, of the School of Physiotherapy, says some participants 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.

“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,” she says.

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’.

With few publicly funded long Covid clinics, most people rely on primary care providers 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.”

“Covid-19 may no longer be considered a public health emergency, but long Covid presents an ongoing and complex challenge for those affected.”

Dr Rhodes is 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 says.

Other recommendations from the study include 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.

“Long Covid isn’t going away and those representing patients, health professionals and researchers will continue to advocate for better support.

“It is time for the Government to listen, step up and take responsibility.”

 

[Hutan]

Dr Sarah Rhodes was on New Zealand's National radio this morning

Long Covid patients report being gaslit about their illness, and feel increasingly let down by the health system. New research by Otago University, which for the first time investigated access to care by those with Long Covid, has found lack of support, unmet need, and inequity of care were common themes. It details a number of recommendations for Government including greater investment in primary care, better training for the health workforce, and the creation of a public awareness campaign. Long Covid is the persistence of symptoms beyond 12 weeks following acute Covid 19 infection. It is estimated to affect one in ten people and can be extremely debilitating.

The research involved interviews with 18 people - two of whom were so fatigued a verbal interview could not be completed - and they had to provide written answers. Kathryn speaks to lead researcher for the project Dr Sarah Rhodes.

Link to the audio here. (edited in later, and before I saw SNT's post below)

Dr Rhodes advocated strongly for better awareness and care for people with Long Covid. The presenter is always sympathetic to ME/CFS and Long Covid, I think having a family connection to ME/CFS.

The only concern is that there seemed to be a message that there are helpful treatments out there. Dr Rhodes spoke approvingly of clinics in the UK and Australia, while acknowledging that these are probably not possible in NZ. She is a cardiovascular physiotherapist and mentioned things like treatments for disordered breathing, and pacing to establish activity levels from which progress might be made to increase activity levels. The difficulty is that 'Long Covid' is a very broad thing, and I guess it's possible that some people might benefit from such treatments, or at least not be harmed by them.

 

[SNT Gatchaman]

Audio link:

Otago survey finds healthcare failing long covid patients

Long Covid patients report being gaslit about their illness, and feel increasingly let down by the health system.

www.rnz.co.nz

 

[Hutan]

Although there is currently no cure for long Covid, there are ways of managing the condition. Studies show that various rehabilitation strategies [5–7] can result in a reduction in long Covid symptoms; as well as demonstrating some benefit from behavioural interventions [8]. Globally, both primary care providers and hospitals have developed services to provide long Covid management, with a range of options available, including in the United States (US) [9], the United Kingdom (UK) [10] and Australia [11]. However, research suggests that general practitioners (GPs) in some countries are impacted by the challenges of this new condition with its complex and varied clinical presentation [12], coupled with time-limited appointments [13].

This in the introduction is a bit concerning. It leaves the door wide open to those who are keen to promote things like the Lightning Process to GPs. Dr Rhodes came across as very sympathetic to the difficulties of people with Long Covid, and I'd really like to see her as an ally. But I wonder if she fully understands how poor the evidence is for so many of the 'various rehabilitation strategies', the 'behavioural interventions' and the 'services providing Long Covid management'.