A national long-term treatment plan is being suggested by doctors after funding ran out when the federal and state COVID agreement ended on December 31 last year.
Five to 10 per cent of COVID-19 cases are estimated to develop into long COVID, according to doctors who say the majority are struggling to cope with their symptoms.
Karen Henry, 62, developed long COVID and also suffers from multiple sclerosis. She said her symptoms make her feel like she is constantly “running on empty”.
“You’re tired all the time,” she said.
”Really short of breath, a lot of pain, a lot of inflammation – I actually ended up in the emergency department at one stage because I was just in so much pain.”
Henry is being treated at St Vincent’s long COVID clinic, which has had long-term funding approved to help mitigate the six- to 12-month wait times.
A team of respiratory doctors, nurses, psychologists, physiotherapists and rehab physicians work to treat those at the clinic but can only help 10 patients at a time.
Associate Professor Anthony Byrne, from St Vincent’s Clinic, said one funding increase was not good enough.
“There are thousands, if not hundreds of thousands of Australians who are suffering,” he said.
“One hospital clinic is not going to see all those patients, so we do need to have a model of care.
“A national registry for long COVID is critical because if we don’t have any idea of the size of the problem, how can we possibly manage that problem?
“Every referral is urgent and important.”
There is no national long COVID plan or registry, meaning the health system is working from estimates to accurately forecast and prepare for the number of patients who need treatment.
Healthcare professionals say the lack of a national registry puts pressure on the medical system and the limited number of long COVID clinics across Australia.
“When the acute phase happened we worked together, we put tonnes of money into it, we got a vaccine, we got sorted,” Steven Faux from St Vincent’s long COVID clinic said.
“Now it’s the chronic phase and there’s just nothing.
“Their lives (patients’) start to spiral out of control – they come to us because they’re struggling at work, but by the time they come to us they’ve lost their job.”
Federal Health Minister Mark Butler said the government needs to “develop a focused national response” and denied that all long COVID funding had stopped after December 31.
He said the government was funding research into “better understanding the long-term health impacts” of long COVID.
