The only publicly funded Long Covid clinic in the country will shut up shop after a short, five-month run.
A patient of the Christchurch-based pilot clinic since it opened in May said it had helped her make huge strides in her recovery.
But with the clinic closing at the end of September, she had been discharged and was worried her progress could go backwards.
The pilot was initiated by Te Whatu Ora Waitaha Canterbury to offer special care to people in the region with a Long Covid diagnosis.
In the five weeks the service was accepting referrals, 109 people, referred by their GP, were accepted as patients.
Patients could receive respiratory physiotherapy, fatigue and cognition support from occupational therapists (OT's), and social work help. A small amount of psychological support was also made available.
Kelly, whose real name RNZ agreed to keep anonymous, has been suffering with Long Covid symptoms for 18 months and can no longer work.
She said it had been soul destroying.
"After I got Covid-19 I couldn't shake the cough, fatigue, sore body, and irritable bowel. I tried to do a bit of work or go for a walk and then I'd be in bed for days."
In May this year, Kelly's GP caught wind of the pilot clinic and signed her up.
Kelly attended six fortnightly sessions at Burwood Hospital. The first three were with an occupational therapist who helped with Kelly's mental health.
"The OT was absolutely fantastic. It helped to get your head around the fact that it's okay not to be at work and put that on hold," she said.
In the final three sessions, Kelly worked with a respiratory physio who gave her exercises to help her breathe properly again.
"When I started at the clinic, I couldn't say this many words without coughing, wheezing and really struggling to breathe. So, they taught me how to breathe, they taught me how to use my diaphragm again and how to suppress the cough that I didn't need to do."
She said the sessions had enabled her to walk further, be more social and feel better.
"My partner even loves me more. Imagine going 18 months listening to coughing all the time. His ears were burning."
Then Kelly was discharged from the clinic.
She felt like the experience was over too soon and said she could have benefited from continued funded support.
"My breathing is better, but I've still got to work on it. There are also other things, I've got aches and pains, and ideally I'd see another form of physio for my body."
The clinic was paid for out of the Ministry of Health's Covid Care in the Community fund for the Canterbury region.
The costs incurred by the clinic were for a very small number of full-time-equivalent staff for a few months only.
Te Whatu Ora - Waitaha Canterbury executive director Allied Health Scientific and Technical Jacqui Lunday-Johnstone said the funding meant it was always going to be a short-term service, for a limited number of people.
"Inevitably there were probably people we weren't able to get to but it's quite difficult to speculate on what those numbers would be."
She did not expect the idea to be replicated in other regions.
"It's really difficult to get a handle on what the unmet need is and whether this would be a priority for how Te Whatu Ora uses its resources."
Lunday-Johnstone said resources should be used to give patients the information and online tools they need to get better at their own pace, while GPs help manage their symptoms.
'There's quite a high burden on our clinics'
Dr Sarah Marr is Kelly's doctor and the clinical director for Halswellhealth in Christchurch.
She said people with Long Covid took up a lot of GP resources.
"Patients tend to need more consultations with the GP and because it's a new disease there's quite a high burden on our clinics.
"Some of practices have got health coaches or health improvement practitioners and depending on their expertise you might be able to use them to support Long Covid patients but not everybody has access to that."
It was sheer luck and good timing that Kelly got into the clinic, Marr said.
Most of her Long Covid patients were extremely disabled and there was nowhere specialised to send them that was publicly funded, she said.
"Unless they have money and they can afford private services it's a real challenge and even private services are limited."
If GPs were expected to bear the brunt of Long Covid care, practices should be provided special funding, she said.
She would also like to see patients get publicly funded occupational therapy, physiotherapy and psychological support.
Marr believed Te Whatu Ora was ignoring Long Covid because it was too big a problem to fix.
"It's like everything with Covid, it's all becoming normalised. Meanwhile, there's all these people who have been made really unwell by Covid being forgotten about and it just seems wrong."
In 2021, the then-Waitematā district health board considered setting up a Long Covid clinic but staff shortages got in the way.
It was ultimately decided Long Covid patients were best managed by GPs.