Waiting lists at long Covid rehabilitation clinics have blown out to more than five months, as experts call for a nationally coordinated approach to managing the condition.
An estimated 5% to 12% of people infected with Covid go on to develop long Covid symptoms – which in Australia could amount to more than 1 million people. Hospital clinics are bracing for an increase in demand from people still experiencing symptoms more than 12 weeks after an initial diagnosis.
Anthony Byrne, a physician at St Vincent hospital’s Covid clinic, said he believed there needed to be a nationally coordinated approach, and suggested long Covid would be best managed by a new centre for disease control (CDC). Establishing a CDC was an election commitment of the Labor government.
“What this is exposing unfortunately for us in Australia is that the record keeping and health information systems are not up to scratch, and we don’t have a national sort of approach,” Byrne said.
The clinic at St Vincent’s has a four-month wait for its respiratory clinic, and a more than five-month wait for its rehabilitation clinic. More than 700 people have been referred to the clinic since it began in April.
Byrne said anecdotal evidence from colleagues suggested a similar picture across the country, although official data from state and territory health departments is near nonexistent.
“Speaking to colleagues on the ground, there are long waiting times in hospital-specific long Covid clinics and that would typically be months, so if you’re a patient suffering debilitating symptoms, that’s not acceptable, it is really difficult,” he told Guardian Australia.
“That’s an issue of resourcing – clinics could halve their waiting times if they doubled the resourcing of medical and other health professionals in the clinics.”
As long Covid case numbers increase in coming months after the Omicron winter wave, waiting times would further blow out, he said.
“They will get longer and it also becomes unworkable – if you’ve got a 12-month waiting list to see someone for long Covid, I mean, what are you going to do for a year?”
Byrne is advocating a national registry for people experiencing long Covid symptoms after 28 days, saying there was no consistent approach among states and territories to the disease and a “concerning” phenomenon where some doctors did not recognise it as a genuine medical condition.
The federal health minister, Mark Butler, has flagged the need for a new approach, saying he had already spoken to the chief medical officer, Paul Kelly, about developing a national, focused response to long Covid.
The World Health Organization has defined long Covid as someone who still has symptoms more than three months after the initial infection, that have lasted for at least two months, and cannot be explained by any other diagnosis.
Long Covid can affect the brain, heart, lungs, pancreas, and other organs, with common symptoms including weakness, general malaise, fatigue, headache, concentration impairment, hair loss, shortness of breath and coughing.
While there is no such thing as a typical long Covid patient, Byrne said it particularly affected the socially disadvantaged, many of whom may have other chronic health conditions. Women are also more likely to report long Covid conditions.
A spokesman for the federal health department said researchers were still working to understand how many people might be impacted by long Covid in Australia, with early research estimating 20% of people experienced symptoms after one month, and 5% after three months.
“The Commonwealth has been working with state and territory governments, clinicians and researchers to make sure that the Australian health system is prepared for the long-term effects of Covid,” the spokesman said.
He also said that national cabinet was considering the effective management of long Covid as it reviewed its national response for future waves of the virus.
The New South Wales government has said it will establish several post-Covid clinics for people experiencing long Covid symptoms from early next year, after a $19m budget commitment.
A Queensland health department spokesperson said the state was not operating any long Covid clinics, but was working “to understand more about those Queenslanders who are experiencing ongoing Covid-19 symptoms after 12 weeks”.
“It is important to understand the nature and extent of these ongoing symptoms, including the way they might impact Queenslanders’ abilities to carry out their daily activities like work, exercise and care,” they said.
The Australian Capital Territory government said many patients with long Covid would be managed by their treating medical practitioner, with 59 patients treated at its post-Covid clinic at the University of Canberra hospital since March.
A Western Australia health department spokesperson said it was “too early to determine” the number of long Covid cases in the state.
