Key points
- A wave of people seeking care for debilitating symptoms of long COVID are struggling to access treatment and being put on public waiting lists for months on end.
- Others pay hefty out-of-pocket costs for specialist care such as neuropsychology.
- Australian researchers say there is an urgent need for funding to ensure timely, ongoing care such as disability support.
Soaring numbers of Australians seeking care for debilitating symptoms of long COVID are struggling to access crucial treatment and being put on public waiting lists for more than six months.
Others are forced to pay hefty out-of-pocket costs for specialist care such as neuropsychology as long-COVID clinics across the country are crushed by demand.
Sherene Magana Cruz had to learn to walk again after being infected and now has severe long-COVID symptoms.Credit:Jason South
Sherene Magana Cruz wakes up each day with searing pain through her shoulders, feet, hips and ankles. Last week the Hoppers Crossing woman was peeling apples when her muscles seized up, leaving her unable to move her arm for days.
Cruz is among thousands of Australians left with persistent symptoms after contracting the coronavirus, in a phenomenon commonly known as long COVID.
More than a year after she was infected, Cruz is still waiting to see a nose and throat specialist over the burning sensation she has at the back of her throat. Simple tasks such as remembering what she has to do on a given day or standing for more than 15 minutes can be excruciating for Cruz, who had to learn to walk again after catching the virus while working in an aged care home.
“It’s been horrific, not just for me, but my family,” she says, her voice breaking.
“My daughter said to me the other day, ‘Mum, I don’t think my heart can take any more of this.’ ”
At the Royal Melbourne Hospital’s long-COVID clinic, neuropsychologist Associate Professor Charles Malpas has been treating a rising number of people with distressing neurological complaints, from “brain fog” and memory loss to insomnia and headaches.
For some, the ailments are so severe they are struggling to return to work. Demand for neuropsychological treatment is reaching record levels and Malpas said people on Victorian public waiting lists could wait between six and 12 months for an appointment.
In rarer cases, patients had waited 18 months, he said, while people who seek treatment through private health insurance can be hit with fees of $700 to $1500, or even thousands of dollars.
“The problem is there is absolutely no Medicare cover at all for cognitive diagnostics,” he said. “There is no way for a patient to access it privately without paying out of pocket. We are talking sometimes thousands of dollars depending on the complexity.”
Malpas works in the public and private systems. He charges patients the minimum fee privately, and treats people free of charge through the Royal Melbourne Hospital’s long-COVID clinic.
Patients often require a three-hour consultation and the specialist diagnosis can include memory and concentration tests, neuroimaging such as MRIs and other biological investigations.
Malpas warned of a growing health crisis and said putting neuropsychological treatment on Medicare would be “an absolute game-changer”, not only for long-COVID patients but thousands of people with early Alzheimer’s and multiple sclerosis who also experience cognitive dysfunction.
“We are hoping that long COVID finally makes politicians realise there is a cognitive epidemic out there,” he said.
Malpas said cognitive symptoms of long COVID can become so entrenched “people shut down their entire lives. But if you get treatment early the symptoms are often reversible and very treatable”.
Geelong GP Bernard Shiu has opened the state’s first community long-COVID clinic and his team, which includes a cardiologist, respiratory physician and psychiatrist, treat eight new patients weekly. The clinic has a two-week waiting list and patients are left about $60 out of pocket.
Some had been waiting six months to get into long-COVID clinics, Shiu said. The most common symptoms are dizziness, chest pain, shortness of breath and persistent cough. But others are arriving with rashes or strange sensations such as recurring pins and needles.
GP Bernard Shiu (left) with Dr Jenny Huang and Dr Victor Wong at his long-COVID clinic in Geelong.Credit:Jason South
One patient Shiu assessed recently had been unable to work for 18 months after being infected with the Alpha strain of coronavirus.
“The most important thing we can do for them is validate their symptoms are real,” he said. “Our job is then to separate what they had before COVID and determine it is definitely long COVID.”
Long-COVID patients are generally defined as people with symptoms of the illness that continue for more than three months after infection, but public health experts have warned Australia is flying blind when it comes to accurately assessing the scale of the condition.
Professor Steven Faux runs a new long-COVID clinic at St Vincent’s Hospital in Sydney that already has 100 people on the waiting list. He fields calls from across Australia about people who are struggling to cope with their symptoms.
“We’ve saved all these lives and now there are a handful of lives that are not really functioning properly and we don’t have the resources to deal with it,” Faux said.
An estimated 7 million Australians have been infected with coronavirus. Faux said 10 to 20 per cent may experience ongoing effects. But definitions of long COVID remain poor and estimates vary. Faux suspects the true number of people with persistent coronavirus symptoms could be anywhere between 700,000 and 1.4 million.
Shiu is seeing the whole gamut: patients who recover quickly after making lifestyle changes, others in which a pre-existing condition such as asthma is the culprit, and more complex cases that cannot be explained by an alternative diagnosis.
He wants to develop protocols so all GPs can manage long COVID.
“The fear is there will be thousands of people with long COVID and the tertiary hospitals just won’t be able to cope,” he said.
Researcher Professor Carol Hodgson said there was an urgent need for funding to ensure ongoing care could be provided to people with long COVID and research could be undertaken into the long-term implications of the virus.
Hodgson, from Monash University’s School of Public Health, led an Australian-first study of hundreds of people admitted to intensive care wards with COVID-19. It found 70 per cent suffered persistent symptoms six months after they were hospitalised, including significant physical disabilities and signs of post-traumatic stress disorder.
With every sector of the healthcare system under pressure, Hodgson said many were now struggling to access appointments to secure treatment for disability support and mental health care.
“It is really distressing speaking to them now and hearing that their needs are not being met,” she said.
”It is such a pity that we have had this opportunity to really study the epidemiology of COVID-19, not just while patients are hospitalised, but to also look at the long-term impacts and it’s been really difficult to be able to do that.“
A federal Health Department spokeswoman said Australians with long COVID can obtain a range of Medicare rebates for treatment, including rebates for every visit to their GP and medication from the pharmaceutical benefits scheme.
GPs can also refer patients to specialists for tests and treatment, which is also rebated under Medicare.
People may also be eligible for Medicare’s chronic disease management items. To be eligible, a patient must have at least one medical condition that has been present for at least six months.
“While neuropsychology treatment and assessments are currently not subsidised under the Medicare Benefits Schedule, a portion of associated costs may be covered under a person’s private health insurance or funded through the National Disability Insurance Scheme for people eligible for NDIS support,” she said.
A Victorian Health Department spokeswoman said there are several long-COVID clinics in the state and plans to roll out additional services. The Victorian Agency for Health Information is undertaking a survey to identify the prevalence and impact of long COVID in the community to better understand demand.
Fore more information about Geelong’s long COVID clinic, visit: geelonglongcovidclinic.com.au
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