‘I don’ t want to be stuck in this house any more’
Long Covid continues to affect thousands of people in the South Island. One charity and its two nurses are struggling to lift the load.
Samuel Chalk used a ski pole rather than a walking cane, one that looked fairly new and had a neon green racing stripe. He only got to take it on the mountain a few times, he said, before using it to lower himself slowly onto the couch.
The constant rattle of the construction site next door grew louder and louder, but Chalk wasn’t bothered, in fact he found it comforting, “It reminds me of what I used to be able to do, before this.”
His home, a 1940s fixer upper, has good bones, it was the reason Chalk bought it. Back when he was well he had planned to “do it up”, and as a builder he was going to do it all himself. But over the years both Chalk and the house became weathered; neither got the support they needed. He has Long Covid, a post-viral illness that occurs after Covid-19 and in lucky cases lasts a few weeks. He has had it for two years.
Some studies show around 10% of people who are infected with Covid-19 could go on to develop Long Covid. That would equate to roughly 66,000 people in the South Island.
There are no specialist physicians, only two Long Covid nurses, and one South Island based charity - MECFS Canterbury - that supports sufferers, but was set up to help those with Myalgic Encephalomyelitis Chronic Fatigue Syndrome. It receives no Government funding, has five part-time employees and survives on donations.
Many South Islanders with Long Covid are well aware of this. They cannot get support, they have been turned down for funding and some have nearly given up.
*Anna was a healthcare worker and caught Covid one day at work. Her hair falls out in chunks, her nerve pain is often so bad she cannot wear pants and she can’t tolerate heat. When she and her husband visited the hot pools in Hanmer Springs, it made Anna sick for six weeks.
She has had five return-to-work plans, none of which have come to fruition as she keeps deteriorating. She has spent thousands of dollars on doctors, and has gone from two household incomes to one with a mortgage.
Single mother Marama* has had Long Covid for two years. Three GPs, two nurses, two social workers and a disability rights lawyer have all tried to help her access support, none have been successful.
Marama has had to stop workingHer day now consists of waking up and walking her five-year old daughter 100 metres to school. She then collapses on a chair and spends hours recovering, before returning to pick up her little girl.
In May 2023, Health New Zealand opened a Long Covid clinic in Canterbury. It was the only one in the country.
One Christchurch patient who started using the clinic when it first opened described being helped by a breathing physiotherapist and Occupational Therapist.
When the clinic closed in September 2023, she was, “left to fend for herself.”
Jacqui Lunday Johnstone, Executive Director of Allied Health at Health New Zealand, said the clinic was only ever intended as a short-term pilot, “to understand community need for a service like this.”
“The nature of Long Covid is that there is a wide range of symptoms which may involve various specialist care or treatment. For that reason, GPs are well placed to work with their patients to refer them to specialist services as needed.”
Akaroa GP Kristofor Sargent does not feel “well placed.” He is still taking on new patients with Long Covid. Because there is no research or treatment, he and his patients work together, sending articles back and forth and discussing ideas.
“The South Island is pretty spread out, it is a bunch of small practices and we don’t have any way of talking to each other about what we are seeing,” he said.
One office, two nurses and a waitlist of patients
Amanda Wyatt is one of two specialised Long Covid nurses in the South Island. She works for MECFS Canterbury, visiting patients in their homes and helping them with symptom management plans.
Ever since the Long Covid clinic closed, she has been slammed. Patient numbers have tripled and a waitlist - currently at eight weeks - has been implemented.
“They shut and stopped funding a service that was important to a lot of people, we just had to take it on,” Wyatt said.
Manager of MECFS, Nicola Stokes, said the increased pressure has meant the organisation purposely doesn’t advertise. If they did, she can’t imagine how many more people would join their waitlist.
They do not receive any funding from the Government, but rely on donations and grants.
For the past three years they have applied for and been denied funding from Canterbury DHB and Health New Zealand.
Johnstone didn’t refer to MECFS Canterbury directly but said, “Health NZ received enquiries from a number of charities and organisations who wish to deliver various health services.”
Samuel doesn’t know what he would have done without the support of MECFS. After getting just one appointment at the Long Covid clinic before it shut, MECFS has been his main source of support.
The organisation has given him letters to take to his GP to help access a new drug, helped him fill out WINZ forms to access allowances and provided home visits from a nurse. They also got him a Total Mobility Card, for taxi journeys.
“It’s rough, you don’t want to weigh them [MECFS] down because they need as much support as they can get and we need as much support as we can get – we’re in the same boat trying to paddle,” he said.
“Something needed to continue after the Long Covid clinic shut, because from what I can tell there's not a lot going on.”
Many Long Covid patients across New Zealand are being denied disability funding because Long Covid itself isn’t considered a disability.
Ben O’Meara, Deputy Chief Executive of Policy, Strategy and Partnerships at Whaikaha, Ministry of Disabled People said a sole diagnosis of Long Covid does not fit with its current eligibility criteria. “Long Covid is currently classified as a chronic health condition in New Zealand. Te Whatu Ora-Health New Zealand is responsible for managing support for people with these conditions,” he said.
Anna is still scared to leave the house, fearing she will get ill. Every time she does, she gains another symptom, off the top of her head she can currently name twenty.
April 6 marked Marama’s two year anniversary since she fell ill. “The pandemic never ended,” she says, “we just decided to normalise a virus which is going round and disabling people, potentially for the rest of their lives,” she said. “I don’t want to be stuck in this house any more.”
* The Press has agreed to keep the names of Marama and Anna anonymous