From diagnosis to services and support: How Australias long COVID response is falling short

Around 5-10% of people in Australia experience symptoms for more than three months after a COVID infection, termed long COVID.

So far, more than 200 different symptoms have been recorded, ranging from shortness of breath to fatigue and brain fog. The effects are far-reaching for those with the condition, often affecting their capacity to work and their quality of life for many months or even years.

With this in mind, we set out to examine Australia’s long COVID guidelines, services and public health information.

Our research found that compared to international standards, Australia is generally slow to recognize and investigate possible cases of long COVID. We also found the availability of multidisciplinary long COVID services was lacking in Australia, as was accessibility of trustworthy public health information.

From COVID to long COVID

Even with all the advancements in medical science, there’s not yet any simple blood test or scan that can definitively tell you if you have long COVID. A diagnosis is based on how long you’ve been dealing with symptoms. But the point at which you’ll receive that diagnosis can vary depending on where you live.

In our review, we examined international guidelines from the World Health Organization as well as national guidelines in the United States, the United Kingdom, New Zealand and Australia.

Most countries, including Australia, wait 12 weeks after the initial infection to officially diagnose long COVID. The US, however, determines a person has long COVID after just four weeks of continued symptoms. This discrepancy can have significant implications for how much support the person will get from the health system.

Guidelines in Australia, the UK and the US do advocate for further investigation if symptoms persist for four weeks after contracting COVID. But we discovered this approach of early investigation is not consistently implemented in Australia.

On reviewing the eligibility criteria for long COVID services in Australia, we found that most of these services require a person to have had symptoms for 12 weeks or more to qualify for care.

Get help early

If your symptoms continue for four weeks or more after catching COVID, it’s important to act early by contacting your GP. They can investigate further and help you manage your symptoms.

Unfortunately not all GPs and health-care professionals are up to speed on long COVID. The Royal Australian College of General Practitioners has called for better education for GPs.

All health-care professionals, especially those working in the community, should be educated about how to spot long COVID early. This will enable them to refer patients for specialized care when required.

Australian long COVID services cannot meet demand

Long COVID is a complicated health issue that can affect multiple parts of the body, and right now there are no specific treatments for the condition as a whole.

However, a mix of supports and services can help. This might include care from a cardiologist, neurologist and physiotherapist for different symptoms. Research has shown that a personalized, multidisciplinary rehabilitation program can have long-term benefits for people with long COVID. Long COVID clinics offer these sorts of programs.

When we conducted our research, we identified just 16 specialized long COVID clinics in Australia.

The vast majority of the Australian population has had COVID at least once. The current best estimate is 80-85%. If we do a conservative calculation and say out of 80% of Australians who have had COVID, 5% ended up with long COVID, that’s at least one million people.

Each long COVID clinic is then essentially tasked with serving more than 60,000 people. Even if we assume many have recovered and don’t need these services, it’s still an impossible task.

So it’s not surprising reports suggest people have had to wait several months to access these services.

Further, all of the 16 clinics were in big cities, and none in rural areas. There were also no long COVID clinics catering specifically to the unique needs of children, elderly people in aged care, or those with a disability.

Another gap we identified is that trustworthy public health information on long COVID, such as online resources, is either not readily available or not advertised. Where these resources exist, they are primarily in English, disadvantaging people with low health literacy or from non-English-speaking backgrounds.

Integrating advice in multiple languages on diet, movement, energy conservation and mental health with clinical support will be of great value to many people who are on the wait list for long COVID clinics.

If your COVID symptoms last more than four weeks, or if new symptoms appear during that first month, affecting your life or work, you might be in for the long haul. Our key message is act early. Book yourself in with your GP or a GP-led specialist clinic.

With COVID cases continuing to accumulate, more and more people will find themselves with long COVID. As a society, we need to fast-track better services and work towards a deeper understanding of the condition.

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