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Even health sector insiders are struggling to negotiate unsupportive COVID systems

Introduction by Croakey: The pandemic has underscored, in so many ways, the critical importance of health literacy. It can, quite literally, make the difference between life and death.

People with higher levels of health literacy are more likely to safely plot a course through the waves of conflicting, ever-changing and politically spun information about COVID, not to mention the tsunami of misinformation and disinformation.

But, as the two accounts below illustrate, even people with high levels of health literacy can struggle to cope in the face of the systemic inadequacies exposed by the pandemic.

The authors each have deep experience of health systems and policies, but have asked to maintain their anonymity for reasons of privacy and employment.


‘Burning throat’ writes:

My friends and family will tell you that I am known for making light of various ailments. I originally trained as a nurse, and do not like to fuss about my own health.

When I started feeling a mildly sore throat and headache last Wednesday, I wasn’t too worried. But the downhill came quickly.

By Friday I started to think I may have “the virus”. My throat was so sore it felt like it was burning, every part of my body was hurting, and I had some breathlessness and sweats as well as diarrhoea.

Living alone at the moment, I told myself that I was lucky to have a well-stocked pantry and fridge with soup in the freezer. I also felt so fortunate to have had three vaccinations and wondered how much worse I would have been feeling if this had not been the case?

I felt incredibly lucky to be in possession of just one RAT test, but also very reluctant to break the seal and seek confirmation. I held off as long as I could and when the test came back negative, I wasn’t convinced as my symptoms kept worsening.

After spending Saturday moving only between the couch and the bed, on Saturday night I decided to seek a re-test. The Tasmanian Government website advised that I should complete an electronic form and wait for an email with an approval number. There were two options for nearby places where I could pick up a RAT test – or one could be delivered within one to two days.

I chose the option of driving to pick one up and received an approval text at 9am the next day asking that I show the SMS approval to the staff at the drive through pick up. All seemed to work reasonably well up to this point – although this bureaucratic process did demand a high level of digital literacy at a time when the last thing I felt like doing was negotiating computers and hoops.

How much harder would it have been for someone who doesn’t have internet access or a computer at home?

In retrospect, I wonder whether I should even have been driving to collect the test. My concentration was reduced and I felt agitated.

On arriving to pick up the RAT, I displayed my SMS and was handed a single RAT like the precious gift it was.

It was then that I started to unpack the missed public health messaging and educational opportunities of this process.

Giving someone who was obviously feeling very unwell one test to take home with no information, advice or even a second test kit for follow-up should symptoms continue seems a complete missed opportunity.

RATs don’t always pick up positive cases in the first few days; so what to do if this again tested negative and symptoms persisted? If I tested positive, would I not need another RAT as a follow up to confirm I was clear after quarantine?

No information was provided on what to do for a positive test. This was in contrast to when I had a PCR test early in the pandemic when I was given a form with comprehensive information about the importance of quarantining if the result was positive.

Having tested negative to the second RAT but with continuing symptoms of COVID, I am left wondering how many other people are out there in a similar situation.

While PCR testing is available, the thought of driving myself to a testing site – while my temperature continues to fluctuate, and queuing in full sun, sitting in a hot car – is not top of my recovery plan.

I wonder how many other people will have COVID that is never recorded in the official figures? How can anyone really know if we are reaching “the peak”?


‘Frustrated’ writes:

I consider myself a reasonably educated and health literate person after working in the health sector for many years. Yet I still struggled to find out what to do when I became sick with COVID.

Last week I started to wonder about my lingering cold symptoms and what I assumed was my asthma cough. But an online search about the symptoms of COVID made me realise this diagnosis was far more likely, especially with my recent history of potential COVID contacts.

I’ve had a dry cough, constant headache, foggy brain, joint and muscle aches, and temperature fluctuations – to the extent that I become a puddle of sweat at various times throughout the day. The only way I can get comfortable is to lie down – but this then triggers my cough. If I attempt any activities in the house, I become breathless.

I haven’t been tested as the RAT kit I bought didn’t work. It showed no lines at all.

I haven’t been able to get a PCR test because I’ve been too unwell to spend time waiting in the Queensland heat in a queue for a test.

This makes me wonder how many other people have been in a similar situation. It suggests that we can’t rely on official figures for an accurate assessment of either caseload or trends whether we are reaching peak infections.

Luckily I live alone, so self-isolating has been easy. On the other hand, living alone in a new city, I have worried about what to do if I get sicker. Who should I call?

I am in generally good health and fitness and am double vaccinated, with a booster booked for early next month. I feel fortunate compared with many other people whose experience of COVID may have been far worse than mine, unpleasant though it has been.

What has bothered me greatly is the media’s emphasis on reporting how many of those who have died from COVID have had underlying health issues.

Hasn’t our aim as a community from the beginning of the pandemic been to protect people who are at greatest risk of harm from COVID? So why is this not seen as a concern now?

Being sick and having time to follow the news, it is clear the COVID pandemic has unveiled the existing faults and stresses within our health system.

As we enter the third year of this pandemic, we need to reform our hospital and healthcare system to increase primary healthcare delivery, public health messaging and health literacy within our community, so that we don’t have to rely on the hospitals.

The pandemic has also highlighted the redundancy of the private hospital system and private health insurance. The public funds that now support private hospitals and private health insurance could be put to better use in the public health system. We need to invest these funds towards the community’s need for extensive, accessible not-for-profit primary healthcare.

It has been frustrating listening to politicians talking about our “world class” health system; this is a nonsense term used by politicians to tell the community to shut up and stop complaining.

While I hope to be over the worst of my own COVID experience, the frustrations will continue when our politicians keep saying ‘we have to live with COVID’ as they prioritise economics over people’s welfare.


Further reading and resources


See Croakey’s extensive archive of articles on health literacy.

 

 

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