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'.

 

[Hutan]

The researchers each completed a reflexivity statement to identify their own reality and reflect on the individual values and beliefs they may hold. Both researchers have a professional background as physiotherapists. Neither has experienced long Covid personally

I don't think the researchers have acknowledged that their training leads them to assume that rehabilitation is a useful approach.

I also don't think the researchers gave the participants an opportunity to comment on the draft findings. I think participants in studies like this need to ask and expect that they will have that opportunity.

15 of the 18 participants have the equivalent of a university degree and 12 of the 18 participants have an honours degree or post-graduate qualification. That skew to people with a high level of education is probably hard to avoid, given the approach to recruitment of posting an invitation on a Long Covid advocacy Facebook group. Both will have a significant impact on the experiences that the participants report.

There is a good spread of participants from New Zealand regions, from urban and rural areas and of different ages, ethnicities and genders.

People's experience of Covid-19 is not reported (e.g. hospitalised or not). We are also not given any indication of the types of symptoms and severity of each participant's Long Covid illness.

 

[Hutan]

Theme 1: Gaslighting and validation

Participants highlighted the fact that often their experiences of accessing primary care resulted in prejudice; primarily not being believed and being made to feel like they were wasting health professionals’ time or being labelled as someone who didn’t contribute to society.

This is an obvious problem and it's good that it was identified.

This is despite greater understanding of the condition over time and a large body of literature confirming the physiological impacts [34]. This medical gaslighting may be partly due to the reliance on medical testing which does not always capture the physiological changes associated with long Covid, as well as an absence of established biomarkers to confirm the diagnosis [34]. Gaslighting of patients with ‘invisible’ symptoms is not new: it has been commonly experienced by the those living with conditions such as chronic pain for many years [35].

However, the authors seem to be treating Long Covid as one thing, rather than a collection of health conditions. 'A large body of literature confirming the physiological impacts' and 'greater understanding of the condition over time' are both a bit of a stretch, especially for people with ME/CFS-type illnesses as opposed to, for example, chronic lung damage.

Where health practitioners did listen and validate, this had a positive effect on the patient experience. Several studies have proposed that health professionals’ attitudes to long Covid present the greatest barrier to care [36–38]. Where there is continuity of care and a trusted relationship develops between patient and clinician, this can be game changing for the patient [14,38].

 

[Hutan]

Theme 2: Lack of support and unmet need

Participants raised the issue of facing barriers in the form of health professionals’ lack of supportive action. Several participants outlined the challenge of getting support in the form of long waiting times, no onward referral, and a lack of equipment or practical solutions, resulting in needs not being met

I struggled a lot with work and income around long Covid because they require all disabilities to have an end date and no one can give an end date when I’m going to stop having long Covid. [Participant 4]

Even people who are eligible for home help can’t get home help because of the way they fund the carers. [Participant 1]

Although there is a dearth of evidence regarding how GPs are coping with the management of long Covid in NZ, studies in Germany [45] and Belgium and Malta [46] reflect the challenges GPs find in diagnosing and managing patients with long Covid, in terms of time, lack of biomarkers, lack of scientific knowledge and the complexity of the condition. Overall, our study participants perceived lack of support left them feeling constrained by existing health system structures and that the system wasn’t fit for purpose. This is mirrored in other research where US participants reported feeling that the system was set up for people to fail at obtaining help [39].

Theme 3: Inequity of available care

Health professionals’ lack of knowledge, lack of action and limited resources, contributed to a variation in care received across different locations and primary care providers, including evidence of urban-rural variation

[My GP’s] they haven’t known what … to do with me. I know someone who’s had long Covid since she had Covid at the start of March this year; so only months. And she’s already got a POTS diagnosis. She’s already seen cardiology. She’s in the same city as me. She’s as sick as I am but she can get all of that stuff. I still can’t even get referred for a tilt table test. [Participant 4]

There's no commentary on the likelihood that some of these desired things may not be very useful e.g. the title table test.

The invisible nature of long Covid appears to have contributed to the lack of available care [34].

However, even differences between different invisible conditions were highlighted with some clinical presentations appearing to be more accepted and supported than others.

If you don’t have a brain injury per se, but your brain is being affected by a virus, there just seems to be this silence around it. [Participant 9

Nor is there commentary on the likelihood of there actually not being much in the way of medical care that can be offered. That's a comment I wanted to make repeatedly as I read the paper.

The paucity of care received by those living with invisible illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome, has been well documented in the literature [48,49] and, to date, there are limited therapeutic options available [50].

There is a good comment about the lack of research. But, there is this assumption that 'existing skills' can be useful in treating symptoms that overlap with other conditions. But, that can be quite problematic, and a short cut to not requiring evidence to support the application of a treatment.

However, some invisible conditions, such as concussion, do have well established treatment plans. Despite increasing recognition of the overlap between the clinical presentation of long Covid and persistent concussion and calls in the literature to use post-concussion frameworks for those with long Covid [52], this appears to have gained limited traction in practice. Utilising existing skills to treat overlapping symptoms, as well as existing pathways as a starting point, may be one means of reducing inequity of care.

 

[Hutan]

Theme 4: Lack of upskilling of health care staff

Participants wanted more explanation and guidance from the health professionals they saw regarding their condition.

Other health professionals working in primary care were sometimes perceived as not having the skills to manage patients presenting with long Covid.
She [the HIP] doesn’t know what to do. I feel so sorry for her. She’s I think, she’s overwhelmed.[Participant 18]

This led to concerns that some health professionals were not accessing the current recommendations for management of long Covid, despite the publication of Long Covid rehabilitation guidelines by the Ministry of Health [15].

And there are still physios doing graded exercise therapy for people with long Covid. And, if you’re going to have physio referrals, they need, physios need updating and educating as well.[Participant 15]

Although there is some evidence of resources being developed for healthcare workers to support patients with long Covid in Canada [58], there does not appear to be a cohesive approach.

(Just noting that there is a problem with the references. Reference 15 should actually direct to reference 14.
Ministry of Health. Clinical rehabilitation guideline for people with long COVID (coronavirus disease) in Aotearoa New Zealand: revised December 2022. Wellington: Ministry of Health. 2022.)

Theme 5: Let down by the Government

While Governments in other countries, such as the US and Australia, have established dedicated long Covid funding, the NZ Government appears to have washed its hands of the issue and is contributing nothing [51]. This is despite previous calls from NZ health professionals to provide funding to support those living with the condition [62]. With the NZ health system under increasing pressure, and an admission that the system is in crisis with high levels of unmet need [63], specific funding for long Covid is unlikely with Health New Zealand highlighting that there is no additional funding for investigation and treatment of long Covid [64].

The current situation is one of geographical variation and fragmented care, primarily offered by private providers. This mirrors experiences elsewhere. In Ontario, Canada, the lack of a cohesive long Covid strategy by government has led to a disjointed approach to patient care, which is now under threat [65]. However, this is not the case everywhere. In England, the NHS has invested £34 million on over 80 adult long Covid clinics [11]. Likewise, most top hospitals in the US provide some form of long Covid service, although there is variation in terms of what is offered [10].

In other places, the absence of clear government action has resulted in strong advocacy from the primary care sector, with organisations such as the Royal Australasian College of Physicians raising concerns about the closure of Australian long Covid clinics and appealing for government funding [66].

Again, the assumption is there that the 'over 80 Long Covid clinics' in the UK are doing something useful. There doesn't seem to be an understanding that having Long Covid clinics can actually be worse than not having them.

 

[Hutan]

Theme 6: Self advocacy and its cost
The quotes here illustrate the process that so many of us have been through - sending our GP papers that we think might be relevant, advocating for access to various specialists who really don't want to see us, getting fed up with our GP, our GP getting fed up with us. The commentary acknowledges how this can easily result in very poor relationships with GPs.

This proactive approach to health care by patients has the potential to shape patient-clinician partnerships in the future. The notion of shared decision making is at the heart of person-centred care and acknowledges the patient’s expertise about their condition [70]. However, nurturing therapeutic relationships is challenging in a system where GPs are overstretched due to staff shortages, an ageing workforce and an increasing number of patients presenting with complex conditions [71]. One solution might be to better utilise the allied health workforce in the primary care sector [72], which aligns with the existing NZ Government priorities [73].

I do appreciate these authors wanting to help, offering a role for other allied health practitioners. But, I suspect the proposed solution is almost the opposite of what we need. Certainly, in practice, if the evidence from existing Long Covid clinics elsewhere in the world gives us any guide, it will be the opposite of what we need.

I think we really need specialist doctors to lead careful diagnostic processes, monitoring and limited patient education, with the help of some specialist nurses. And to only offer speculative treatments as part of good quality trials.

Certainly, there is a place for some allied professionals - physios and dieticians helping to care for bedridden patients, occupational therapists helping to identify and obtain useful mobility aids. We definitely do not need a whole lot of allied health practitioners offering a diversity of therapies that someone thinks has helped someone. That is not the way towards removing the stigma people with these sorts of conditions endure.

 

[Hutan]

Theme 7: Throwing money at it

There's a lot of great quotes there about how desperate people felt, and how they have tried all sorts of therapies.

I’ve tried over 20 different forms of treatment and therapy. [Participant 7]

So she told me the name of the expert, …, so I made a private appointment to see him at $405. Just about killed me. But anyway, and he had nothing to offer. He had nothing to offer.[Participant 3]

The authors acknowledge the vulnerability of people with Long Covid to quackery:

There was frustration that people with long Covid were ripe for exploitation due to the failure of health services to provide for them.

Online it is clear that desperate souls are open to being taken advantage of by alternative practitioners – our care should be clear in mainstream medicine so we are not open to this![Participant 18]

But the authors don't seem to completely understand just how much of the mainstream medicine response (some of which they explicitly suggest is helpful) is also quackery.

Insufficient information and health literacy both contribute to susceptibility to quackery [74]. Raising awareness of long Covid through a public awareness campaign, with a particular focus on those groups who are often marginalised by health care, might serve as a good starting point.

 

[Hutan]

Strengths and limitations

One of the key strengths of this study was the qualitative approach to data collection, which thoroughly captured patient experiences, resulting in richly detailed data, supporting the purpose of the study. This approach supported participants to share their stories, allowing for more nuanced perspectives than alternative data collection methods such as surveys.

I wonder if this is true, I wonder how influential the reporting of what 18 people say is? It seems possible that a survey that asked 3000 people a handful of well crafted questions might be much more useful. Its harder to bat something like that away as the voice of a tiny but noisy minority.

I hope my comments aren't too negative. I appreciate the fact that the authors care, and their advocacy in the media is likely to be helpful. But, I think it would be good if they took some time to talk widely about an appropriate way forward, and listen, before calling for services staffed by allied professionals. I think the negative experiences of people with ME/CFS and Long Covid in the places that the authors hold up as having examples of good care should be considered.

 

[Utsikt]

Based on the sections you’ve quoted, you’re probably spot on, @Hutan

This is yet another case of tools looking for solutions and people being unable to consider that everything might be broken.

 

[BrightCandle]

One thing that strikes me as we read similar styles of qualitative studies from across the world on Long Covid is how similar it is across countries. You get this level of gaslighting and patient abuse and also this view that somehow "rehabilitation" will cure all based on consistent training but very varied healthcare systems. This garbage hasn't impacted a few healthcare systems its built into the foundation of them all, the entire field is broken and it can not see it, accept it and change. The patients views are the system is terrible and that gets filtered into "but its OK because they just need magic rehab". This is why these qualitative studies that drive to a solution of some sorts rather than just letting the patient interviews stand for themselves are bad, the expert opinion of the authors is riddled and filtering the problems the patients are reporting.

 

[rvallee]

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'.

It also totally covers up the fact that when patients say that health care is failing us, it's literally because of this garbage. The problem of sick people being exploited by alternative medicine quacks is a distant problem compared to the fact that real medicine itself mostly offers quackery. The solution they always propose is always the problem. Meaning that the problem has not been with any of the context, the patients or the illness, but with the medical profession itself. A system that keeps proposing the problem itself as a solution is not fit for purpose.

It shows that the people who are failing us don't even understand how they are failing us. Even though we tell them all the damn time, including in studies like this. I have no capacity anymore to give people the benefit of doubt over this. Good intentions don't mean squat when they all systematically fail at the most basic things.