Long COVID plagued by ‘confusion and undereducation’

Michelle Wisbey

5/10/2023 3:44:51 PM

Patients are ‘falling through the cracks’ due to a lack of treatment, according to researchers calling for a diagnosis overhaul. 

Long COVID written on a line of dominoes.
Specialised long COVD clinics are beginning to close across Australia, leaving patients ‘hanging out to dry’.

They often feel like the forgotten patients – months, or even years, after testing positive, thousands of Australians are still suffering the effects of long COVID.
The virus comes with a shopping list of unwanted symptoms, from fatigue to shortness of breath, joint pain, brain fog, and anxiety.
But despite its severity and prevalence, Australia’s response to long COVID is ‘falling short of international standards and needs an urgent overhaul’.
That’s according to new RMIT University research, which is calling for the immediate rollout of innovative care models that address individual patient needs at an affordable cost.
‘Long COVID patients have fallen through the cracks due to poor diagnosis, complex multiple chronic disease needs and poor access to healthcare,’ the authors said.
‘Besides long COVID clinics, future solutions should focus on early identification that can be delivered by GPs and all credentialed allied health professions.’
RACGP Fellow Dr Elizabeth Williams is a GP with significant experience in treating long COVID, which she likened to chronic disease management.
‘I’m still managing patients from 2020 or 2021 who are incredibly debilitated by their long COVID,’ she told newsGP.
‘We are two, even three years after their initial COVID diagnosis and some of them are starting to feel quite pessimistic about meaningful recovery.’
The most common definition of long COVID is when a person experiences symptoms for longer than 12 weeks.
More than 11 million confirmed cases of COVID have been reported in Australia, but up to 40% of people experience symptoms three months after their diagnosis.
The study’s co-author Professor Catherine Itsiopoulos warns if nothing is done, access to quality care and public health information will only worsen over time.
‘Long COVID is here to stay. As COVID-19 cases continue to accumulate, the cases of long COVID will also increase,’ Professor Itsiopoulos said.
‘With unclear diagnosis and unknown effective treatment, this new chronic disease will be highly costly to the individual and on public health systems worldwide.’
For the study, researchers compared long COVID guidelines and services in Australia, and found significant gaps between what is recommended and what patients experience.
It found Australia is lacking especially in areas of early investigation, accessibility and availability of trustworthy public health information, and adequate multidisciplinary long COVID services to meet demand.
It specifically called out confusion around the condition’s definition, saying GPs need more guidance when it comes to diagnosing patients and is calling for:

  • patients with COVID-19 be monitored for long COVID from four weeks after infection
  • addressing mental health issues in the acute phase
  • investigating symptoms at 4–8 weeks
  • the continuation of dedicated long COVID clinics.
But those long COVID clinics are becoming a dying breed, with many already closing their doors.
Dr Williams is all too familiar with the effectt these clinic shutdowns can have.
‘I’ve been more and more frustrated by the closure of the services that previously I was using with at least some impact, and it’s very disappointing to see the multidisciplinary clinics close all around me,’ she said.
‘We need these clinics to refer to. Patients need exercise physiology, they need occupational therapists … they need the psychology support to deal with the understandable depression and anxiety that can arise.
‘These clinics are so important and with their loss it’s just leaving people hanging out to dry really.’
Dr Williams’ advice to GPs seeing patients with long COVID is to educate themselves on what COVID looks like and the broad range of symptoms it can encompass.
‘Understand what the red flags are and what critical things you need to identify and exclude and then institute an early multidisciplinary approach,’ she said.
‘Patients and GPs can be cautiously optimistic that with good support and some lifestyle changes that things can be managed.’
Dr Williams’ top tips for GPs are offering simple management strategies early on, such as the ‘three Ps of fatigue management’ – pace, plan and prioritise – or reducing work hours.
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