After waiting a year for an appointment, a patient tells RR she has to go back to the start.
Some patients have had their referrals to a public rheumatology clinic in Melbourne cancelled after a year-long wait, as healthcare services prioritise patient care during Victoria’s second COVID-19 outbreak.
Natasha Thomson, who lives in Melbourne, was recently notified by The Alfred Hospital (Alfred Health) that her referral for their rheumatology outpatient clinic had been cancelled because her case had been assessed as “not requiring urgent care”.
Rheumatology specialists have acknowledged, in light of the pandemic, how delays to diagnosis and treatment can have immediate and long-term implications for people affected by autoimmune conditions.
Ms Thomson told Rheumatology Republic she had first been referred to The Alfred’s rheumatology outpatient clinic in May 2019 after she was admitted to the hospital with debilitating lower back and hip pain.
Ms Thomson suspected she had Ehlers Danlos syndrome, a diagnosis which she said has since been confirmed by an orthopaedic surgeon and pain specialist, though she is yet to see a rheumatologist at The Alfred’s clinic.
“I would have been satisfied with a letter saying, ‘Due to COVID, we’re focusing on patients marked as urgent. We’re going to have to delay your appointment for approximately X number of months,’” Ms Thomson said. “[But] my referral has been cancelled; I’m not on the [wait] list any more.”
Ms Thomson received the notification from Alfred Health via text message with a link to a digital letter. The letter directs patients to return to their GP to have their condition reassessed.
The Alfred said in a statement that it understood these changes might be disappointing for some patients.
“Alfred Health has not been alone in needing to reduce specialist clinic activity to maintain patient and staff safety, and ensure that resources are available for urgent care across our sites, and throughout our community,” an Alfred Health spokesperson said.
“Our clinical teams are working hard to see urgent outpatients, utilising different consultation methods including telephone, telehealth and face-to-face consultations.”
Under the current stage 4 restrictions (which came into effect on 2 August), the Victorian Department of Health and Human Services (DHHS) has advised that health care services including those provided within and to support public and private hospitals are to remain open following their COVID Safe Plans.
Healthcare workers are bearing the brunt of the pandemic and many Victorian staff have contracted the virus. Eight healthcare workers at The Alfred Hospital tested positive to COVID-19 in July, which may have disrupted hospital workflows.
A senior doctor in a public hospital, who did not wish to be named, said demand for specialist care had been growing rapidly in recent years but there had been little growth in capacity in the public health system to manage rheumatology outpatients.
“The system simply wasn’t keeping up before this [pandemic], and patients are the ones who will get hurt even more,” the physician said. “We’re just all afraid that the future funding of public outpatient specialist rheumatology clinics will be even more bleak after the pandemic ends, asking more of clinicians and providing less.”
Advice for patients living with rheumatic and autoimmune diseases during the coronavirus pandemic has been updated monthly by the Australian Rheumatology Association. Those patients are advised to continue their treatment and talk to their GP or rheumatologist if they have specific queries.
But patients who are waiting for specialist care, possibly for an undiagnosed or untreated chronic condition, may find it more difficult to get the medical advice and support they need at this time.
Ms Thomson said that while she had a good relationship with her GP, the cancellation of her referral by Alfred Health felt like “going back to the start again”.
She said that detailing how her chronic condition may have changed or progressed since her first hospital admission, as she has been asked to do for a new referral, would take a mental and emotional toll. “We don’t necessarily have the energy to spare to keep doing that,” Ms Thomson said.
Alfred Health’s spokesperson said: “There are many non-urgent outpatients who are waiting for care, who may not be able to receive it in a timely manner. It is safer for those patients to be discharged into the care of their GP, who will ensure they receive the care they need, rather than leave them on a waiting list.
“If the patient’s condition has changed since the initial referral was made, their GP will be able to decide if it is appropriate to make a new referral and if care is urgent, Alfred Health will provide that care.”
Ms Thomson said her biggest disappointment has been the communication from Alfred Health. She wished she had been given the option to choose whether her referral was deferred, managed via telehealth or possibly redirected to another public clinic.
That, she said, would remove “this feeling of helplessness which is already at an all-time high during this pandemic”.
Ms Thomson’s complaint has been forwarded to the DHHS COVID-19 response team for consideration.
DHHS continues to advise Victorians not to put off getting medical care.
Rheumatology Republic understands that private rheumatology clinics in Victoria are seeing patients in a reasonable timeframe.
