Long COVID sufferers in regional New South Wales are being turned away from the state's only specialised treatment centre in Sydney, prompting calls for a greater focus outside capital cities.
Among those calling for funding is Natasha Barnett, 33, who caught COVID over the New Year party period in Newcastle at the end of 2021.
She said her life prior to that was active and fun.
"I was quite a bit of fun, a social butterfly, and would jump at the chance of seeing my friends, take the puppies for a walk, go see Grandma and spend time with my partner," she said.
Fast forward six months and Ms Barnett's life has changed dramatically.
She said her 82-year-old grandmother was more sprightly than her.
"I've had excruciating pain, particularly on the left side of my eye, vision problems, like I couldn't see properly.
"Look at me … I just don't even feel like the same person anymore. I look different; I can see how unwell I look, especially around my eyes."
There are still no official figures on the prevalence of long COVID in Australia, but overseas data suggests between 10 and 30 per cent of people who contract COVID-19 will have ongoing health issues.
Researchers brace for long COVID crisis
Newcastle-based respiratory specialist Peter Wark has made it his mission to help long COVID sufferers like Ms Barnett, by understanding how and why it impacts people in different ways.
With millions of Australians infected with the Omicron variant, Professor Wark wondered whether the nation needed to brace for a tsunami of long COVID cases.
Sydney researchers say one in five people with long COVID have shown signs of brain fog and memory loss, with no improvement even 12 months after diagnosis.
Professor Wark said he was concerned about what was to come.
"Then there is a really complicated and a lot more varied group of individuals who really have quite a broad set of symptoms that persist beyond those three months or so after their acute illness.
"Unfortunately it can stretch on much longer and that probably is the description that fits best to what people are talking about or referring to when they talk about long COVID."
Desperate for help
Ms Barnett sought help from the state's only long COVID clinic at St Vincent's Hospital in Sydney.
But she soon realised she would not be able to access treatment.
"Hi Natasha … thank you for your email," the response read.
"Sorry to hear about all these complications you are through post-COVID … you would benefit from being seen by a rehab specialist based on your symptoms.
"Unfortunately, we are referring patients to their local rehab specialists due to our long waiting list."
Ms Barnett was devastated.
"I just feel like it has been this constant downturn of all these things together and bringing on depression. In my 33 years, I have never felt that way before," she said.
Professor Wark said without extra clinics the outcomes, particularly for people in regional Australia, could be dire.
"We need self-management skills for individuals, we need to skill up general practice to assist and we need to skill up other professionals for those with the most severe disease," Professor Wark said.
NSW Health told the ABC more long COVID clinics were on the way.
"The NSW government recently announced $19 million in the 2022-23 budget funding to establish several new post-COVID clinics for NSW residents experiencing lingering symptoms of COVID-19 more than 12 weeks after infection," a spokesperson said.
The clinics will be established across the state from early next year.
