Introduction by Croakey: Submissions for the initial stage of Australia’s COVID-19 Response Inquiry opened this week, with a deadline of 15 December 2023. Evidence and information submitted during this stage will help inform further stakeholder engagement in 2024.
The news comes amid Australia’s next COVID-19 wave and renewed calls for people to check they are up-to-date with their vaccinations. As reported by Croakey last week, mixed messages have been sent regarding mask-wearing in response to the increasing cases.
Meanwhile, Dr Shiqi (Rose) Luo, Mary Goodman, Associate Professor Zhen Zheng, Professor Catherine Itsiopoulos and Distinguished Professor Magdalena Plebanski from RMIT University share details about new research highlighting gaps in Australia’s long COVID support services.
Shiqi (Rose) Luo, Mary Goodman, Zhen Zheng and colleagues write:
Australia doesn’t have enough specialised clinics to address the need for long COVID care, research by RMIT has found. Additionally, reliable, up-to-date information about long COVID is often not well-promoted.
Furthermore, these resources are mainly in English, which is a barrier for individuals with limited health literacy or who mainly speak languages other than English.
Given approximately five to ten percent of Australians who have had COVID-19 are right now lost in a fog of diverse and confusing long COVID symptoms – based on AIHW data – this means insufficient education, limited support services, and a lack of engaging resources in multiple languages are matters of concern.
It is important to provide access to long COVID services and support early detection.
Long-lasting legacy
While most of the Australian population has received their initial dose of COVID-19 vaccines and we know a lot more about the virus than we did three years ago, the pandemic is continuing to impact the lives of many.
Its long-term effects on individuals, communities and society, economy and health systems are yet to be fully realised.
Long COVID can look very different from person to person and recovery tends to be non-linear.
In addition to the challenging experiences faced by patients, clinicians are faced with a confusing array of symptoms which make diagnosis and treatment challenging.
There are over 200 possible Long COVID symptoms. Some are common but difficult to navigate like fatigue, brain fog, shortness of breath, while others have a far less obvious link to COVID. What may seem like an obvious treatment for one symptom could negatively affect patient recovery from another.
New research to light the way
Our study conducted by RMIT University explored the complex challenges of addressing long COVID in Australia.
By comparing and assessing the quality of long COVID guidelines from the World Health Organization (WHO), and in the US, UK, NZ and Australia using the AGREE II tool, as well as reviewing the clinical support available to long COVID sufferers in Australia, the research identified several issues which affect treatment, support and recovery.
In addition to a lack of specialised long COVID clinics, language barriers and limited awareness of support, the issues include research funding and workforce training.
Insufficient long COVID clinics to meet demand
Creating and running programs that involve multidisciplinary experts can be expensive. During our research, we found out that three long COVID services from Victoria were already terminated due to lack of funding.
Also, there’s a notable gap in applying research findings in Australia due to limited funding for implementation. This issue was highlighted in the Senate inquiry into long COVID and recurrent infections.
Research has revealed that individuals with long COVID can greatly benefit from a personalised, multidisciplinary rehabilitation program., which are readily available at long COVID clinics.
In Australia, we don’t have enough specialised clinics to address the growing need for long COVID care. There were only 16 long COVID clinics across Australia, including nine in Victoria at the time of research.
An estimated 80-85 percent of Australian adults have had COVID at some point. Using a cautious approach to the numbers and saying only 5 percent of people with COVID end up with long COVID, still may mean more than one million people with the new chronic illness. This means each long COVID clinic is looking at the massive task of helping more than 60,000 individuals.
In addition, the waitlist can stretch beyond six months, causing significant challenges for those suffering from long COVID who can’t afford to wait that long for the care they require.
Following the public hearing in the Senate inquiry, the Committee recommended that funding should be allocated in collaboration with state health departments to establish multidisciplinary long COVID clinics in selected public hospitals. These clinics would adhere to nationally consistent referral guidelines for screening patients with complex long COVID complications.
When does help for long COVID start?
Unlike the World Health Organization (WHO), the Centers for Disease Control and Prevention (CDC) in the US classifies long COVID as the presence of symptoms four weeks after the initial infection.
Our study recommends that individuals experiencing ongoing symptoms like cough, shortness of breath, fatigue, or rapid heartbeats four weeks after a COVID-19 infection—instead of waiting for the 12-week mark recommended by WHO — should reach out to their GP. Our recommendation of early detection and investigation is also consistent with the National Strategic Framework for Chronic Conditions.
We come up with this recommendation after reviewing/assessing/comparing the 5 long covid guidelines, three (US, UK, AUS) out of five suggested early review (seeking doctor’s checkup) if symptoms last 4 weeks after COVID-19 infection to prevent persistent symptoms or detect severe illness. Therefore, we used this timeline instead.
Early intervention with a multidisciplinary team helps to prevent long-term issues and identify any other serious health concerns.
Health information that helps everyone
It is crucial to offer clear, easy-to-understand, evidence-based information in different languages. This empowers people to act promptly if they contract COVID and also to know when to seek early medical attention if their symptoms persist.
The RMIT study found there are some patient resources about long COVID from WHO, CDC, and the Royal Australian College of General Practitioners (RACGP). However, these resources are in text format and are only provided in English. We will be publishing further information on this in an upcoming publication currently under review.
However, we call for more user-friendly and multilingual digital resources related to long COVID.
Not only patients are left in the dark—our research found that many doctors and other healthcare professionals lack sufficient knowledge about long COVID.
In their submission to the Senate inquiry and public hearing, the Consumers Health Forum of Australia pointed out that patients often faced problems such as their regular doctor not recognising long COVID, denying that their symptoms matched and suggesting outdated treatments.
The Australian Psychological Society, after observing patients at the Long COVID clinic in the Royal Melbourne Hospital, noted that these patients have expressed challenges in gaining the trust and belief of their healthcare providers.
The committee recommended providing support and education to GPs and other primary healthcare providers for the diagnosis and management of long COVID in those affected.
The RACGP has also proposed that long COVID education should be part of the continuing professional development. In fact, a recent webinar on long COVID took place in October 2023, hosted jointly by the Department of Health Victoria and RACGP Victoria.
Patient resources and support
Royal Australian College of General Practitioners patient resources for Long COVID
World Health Organization patient information
Centre for Culture, Ethnicity & Health long COVID website
See Croakey’s extensive archive of articles on long COVID.
