Viv Allen, mother and caregiver to a long Covid sufferer, wants the introduction of long Covid clinics in New Zealand. Photo / Dean Purcell
Long Covid patients in New Zealand are reporting myriad tricky symptoms, from heart problems to anxiety. Would specialised long Covid clinics make a difference?
In a small, two-storey unit in Freemans Bay, Rose spends her days in a darkened room.
The 38-year-old wears noise-cancelling headphones and dark glasses because of extreme sensitivity to sound and light. She is bound to the upper floor of her home because walking downstairs requires energy she does not have.
Rose, who asked for her surname not to be published, was thriving a year ago. She had started a dream job as a commercial property manager. She was “ultra-fit”, her family said, and volunteered to help on tramping trips on weekends.
In April, she travelled to see her sister in Melbourne, where she caught Covid. She was fully vaccinated and it was a mild infection, but she never recovered.
Back in Auckland, her condition gradually declined. At first, she was able to drive to the doctor and walk downstairs to make her meals. But walking down a flight of stairs, or any physical exertion, eventually became too exhausting and left her breathless.
Nine months later, she still suffers headaches, nausea, soreness, breathlessness and a racing heart - all symptoms associated with long Covid. Since around Christmas, she has experienced anxiety and panic attacks.
She is able to shower but not much else, and relies on her family and friends to buy groceries and provide meals to her. She can only hold a conversation for up to two minutes at a time, and was too ill to be interviewed.
“It feels horrible,” her mother Viv Allen told the Herald. “My lovely daughter, who was just enjoying life, had just got the best job ever, bought her first house, life was great. She had a wonderful group of friends. And it all came crashing down.”
Rose has a sympathetic GP who rings her every week, and has referred her to a specialist and arranged a mental health assessment. But her family say that long Covid symptoms are so varied and complicated that it is very difficult to get the help she needs.
A Victoria University study published this week showed their situation is not unique. The research, based on 1000 New Zealanders infected with Covid in 2021, revealed that one in five of them reported symptoms of long Covid. The participants felt their condition was poorly understood by health professionals and they were not getting adequate support.
Dr Sarah Rhodes, a cardio-respiratory physiotherapist and lecturer at the University of Otago, said that at this stage doctors were simply managing long Covid symptoms because there was no recognised treatment.
“In terms of these patients, the most important thing is that they are heard and believed,” she said. “There is still evidence that, in some cases, these people are being gaslit by their GPs when they attempt to seek help.”
Cellular immunologist Dr Anna Brooks, from the University of Auckland, is studying the immune dysfunction caused by long Covid and its similarities to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The patchy healthcare response to long Covid is comparable to those disorders, which can also occur after a viral infection, she said.
“Some [long Covid patients] are still being told that you probably didn’t have Covid, your symptoms are anxiety-induced, and all that horrific barrage of inaccurate stuff.”
Viv Allen is questioning why New Zealand has not yet established dedicated long Covid clinics, which were in place in England and some Australian states. Patients referred by GPs are helped by a group of health professionals including specialists, doctors, occupational therapists, psychologists and others, who meet weekly to discuss a multi-disciplinary plan for a patient.
Experts said there was general acceptance in the health sector that multi-disciplinary services were needed to address long Covid, but this had not yet been matched by funding. Some services had been embedded in existing clinics but these were ad hoc and there was no nationally co-ordinated approach, they said.
Brooks said there had been a groundswell of support among long Covid patients for dedicated facilities in New Zealand. But she noted that these clinics had not yet delivered for patients overseas.
“Some form of clinical assistance is required, absolutely. It’s just that there has to be the expectation from a patient perspective about the level of clinical care that can be delivered while we are still trying to understand the illness.
“Ruling out immediate serious medical concerns is a very important first step, [but] once a diagnosis of long Covid is received the recovery programme thereafter is not yet clear.”
She added that New Zealand won’t be able to understand the full scope of healthcare that might be required, including treatments, until we understand the mechanisms of the disease.
“And we can’t understand the disease until there is some solid investment in biomedical research. So that’s the vicious cycle.”
Dr Martin Chadwick, chairman of the Ministry of Health’s Long Covid Expert Advisory Group, acknowledged that the ability to support people with long Covid in New Zealand was still evolving.
He said some districts in New Zealand were considering the potential for dedicated clinics, and the ministry was monitoring this closely - along with specialty clinics overseas.
The ministry’s primary response to long Covid so far is the development of long Covid guidelines for doctors and patients, released in August last year.
Brooks said there was no guarantee doctors had read, understood or applied the guidelines - which was understandable given their huge workloads.
The ministry’s main resource for patients is a list of potential healthcare facilities and their websites. Allen said long Covid patients were mostly left to navigate the multiple strands of the health system themselves, with little knowledge of the potential costs or whether healthcare workers will have experience in dealing with long Covid.
While their GP was highly capable and regularly in contact, Allen said they were overloaded and did not have experience with long Covid patients.
“If anything, my daughter has been teaching them about long Covid.”
Two weeks ago, 10 of Rose’s friends and family set up a roster to sit at her bedside every day from 3pm to 5pm. Some of them travel from Taranaki, Raglan and Matamata to support her. She has a cat named Hugo, one of the few bright spots in her now-restricted life.
Written on the blackboard in her kitchen downstairs is a reminder of her life before long Covid. There is a list of walking tracks and adventures she has done or hoped to do: the Kepler Track, Whanganui River, Old Coach Rd in Ohakune.
“When people ask after her they keep expecting me to say ‘Oh you know, she’s better’,” Allen said. “It’s so hard to tell people ‘She’s worse. She’s worse’.”
The Crown's key witness was ruled immune from prosecution in exchange for his evidence.