By Jean Kennedy

Copyright abc

A patient of NSW’s first dedicated long COVID clinic in Sydney says she is “devastated” and “bewildered” that it will close at the end of the month.

St Vincent’s Hospital in Darlinghurst said its long COVID service had been supporting patients experiencing “persistent symptoms following COVID-19 infection” for three and a half years.

In a statement, the hospital said it was now transitioning patients into its existing respiratory, rehabilitation and specialist services from the end of September.

“With growing knowledge and clinical experience, it is now recognised that post-COVID symptoms are well managed within established specialist chronic and complex care services,” a hospital spokesperson said.

“This is the widespread and standard clinical practice across NSW’s health services and in other states.”

‘A lot of really unnecessary suffering’

Hawkesbury resident Charlotte Sangster said she felt “abandoned” and cried when she heard the clinic was closing.

“I just think there’s going to be a lot of really unnecessary suffering, and a lot of people leaving the workforce when it can be prevented,” she told the ABC.

After dedicating much of her career to the disability sector, a COVID infection in late 2023 led to debilitating ongoing symptoms and she was forced to leave her full-time job running a disability organisation.

“I was generally operating at about 30 per cent,” she said.

“I had really, really extreme fatigue, heavy muscles, I was not able to to get out of bed in the morning, not able to go for a walk. I had brain fog and was dizzy all the time.

“I just couldn’t do it anymore so I had to look for something part-time and that’s had a massive financial impact on me.”

She finally secured an appointment at St Vincent’s Long COVID Clinic this year and saw remarkable improvement in her symptoms.

“They’ve done more for me in two appointments than any other specialist I’ve been to,” she said.

“These are game-changing things for people when they’re living with an illness that’s so complex.”

Push to reconsider clinic’s closure

Ms Sangster has written to Health Minister Ryan Park and St Vincent’s Hospital management, pleading with them to reconsider the decision to close the dedicated, multi-disciplinary service.

“After almost 18 months of seeing various specialists who did not have the necessary expertise in long COVID, just two appointments at the St Vincent’s clinic significantly improved my quality of life,” she wrote.

“For many of us, the clinic has been the first effective, coordinated care we have received.”

Another long COVID sufferer, who spoke to the ABC on the condition of anonymity, said she was on the waiting list for an appointment at St Vincent’s before being advised the clinic was closing.

She said she then contacted a “virtual COVID clinic” but was told she was not living in the catchment area and they could not help.

“I was in tears,” she told the ABC.

“I can’t believe I haven’t seen a relevant doctor and haven’t got the help I need.”

The woman said she had “never experienced anything like this” in her life and that she could not get out of bed, go to the bathroom or shower without help.

“Basically, I was running the house, working full time and doing bushwalks on the weekend,” she said.

“Right now, if I walk twice from my bedroom to the kitchen I have to sit down, my heart rate goes up, my blood pressure goes up and I have to open my mouth to breathe.

Hospital vows to ‘ensure continuation of care’

In its statement, St Vincent’s Hospital said patients who had been visiting the clinic would continue to receive the same comprehensive care “but within well-established clinical frameworks and with specialist input available as required”.

“Patients currently under the care of the Long COVID Service will be contacted directly by our team in the coming days to discuss their transition and ongoing symptom management,” the statement read.

“We are working to ensure continuation of care for all patients.

“For new patients with post-COVID symptoms, St Vincent’s recommends primary care clinicians direct their referrals towards respiratory medicine or rehabilitation clinics in local health districts.”

A spokesperson for Mr Park said the “advice is that people with long COVID can be supported by their GP, with referral to specialised clinics”.

NSW Health said care and treatment for people with long COVID was supported under a dedicated clinical practice guide and mode of care, and most people with long COVID would be supported by their GP pending referral.

“Patients with multiple symptoms which reduce ability to perform everyday tasks or activities are generally best managed in local multidisciplinary rehabilitation clinics,” a spokesperson said.

“Care delivered at these clinics is specific to the symptoms and individual needs of each patient and may be provided virtually or in-person, depending on the service model used.”