Long Covid sufferers disappointed to be left out of inquiry

Otago Daily Times

a day ago

People with Long Covid are disappointed they will not be prioritised as part of public hearings about the government's pandemic response.
Phase two of the Royal Commission of Inquiry into the official response to Covid-19 gets underway in Auckland on Monday, and will run until Thursday.
It will hear from everyday people and their experiences of the government's decisions over vaccine use and lockdowns, including the extended lockdowns in Auckland and Northland. It will also hear from businesses and organisations affected.
Long Covid Support Aotearoa spokesperson Catherine Appleby said she felt in choosing its focus, the inquiry had missed an opportunity to include the perspectives of people with post-Covid conditions.
"A massive mistake really, to do that, because we were directly affected and our lives are still particularly affected as well."
Appleby worked as a nurse at an urgent care centre when Covid-19 hit in 2020.
Each day, after her shift, she would have to strip down her clothes on her doorstep, in the hope she wouldn't transmit Covid to her whānau. It's something many other healthcare practitioners did.
In 2022, she caught Covid-19 herself. She returned to work thinking she was recovered, but the symptoms didn't go away.
She reduced her hours of work in the hope it would improve things, but it didn't.
"Finally, I just had to decide, and at that stage, I was over two and a half years into Long Covid, and I thought, 'I'm looking down the barrel of non-recovery. If I want to have any chance of recovery, I just have to stop working completely'."
Appleby explained there were significant effects on people with Long Covid.
It often affects their ability to work, leading to loss of income, lack of financial and health system support, and impacts on social and family life, she said.
She said thousands of people experience Long Covid across Aotearoa, all the more reason to include their voices in the hearings this week.
"Covid is still around, and the Long Covid numbers are likely to increase. Even if you are immunized, the estimate is up to 10% of people who catch the infection will get Long Covid."
Long Covid Support Aotearoa has called for an inquiry into the condition, much like the one held across the ditch in Australia between 2022 and 2023.
A new Otago-led study, published in the International Journal of Paediatrics and Child Health, found that more than 20% of children and young people in Aotearoa are experiencing significant, persistent health symptoms following Covid-19.
Lead Author and Associate Professor from the University of Otago's Department of Public Health, Julie Bennett, said her team conducted interviews with nearly 4300 children (or their parents for those under 16) to understand their experiences and symptoms after Covid-19 infection.
The symptoms included things like headaches, fatigue, coughs, and anxiety, which they didn't have before having Covid, she said.
"They were also reporting that they were unable to attend school because of having these symptoms, or they were unable to attend things like going to sporting events or activities that they normally would be able to do. These symptoms weren't just happening; they were actually limiting their ability to be able to participate in life."
Regarding New Zealand's response, Professor Bennett said having a proper pandemic plan in place is key.
"We did manage to get together really quickly, a good group of people to be able to make decisions, and making really hard decisions, on the spur of the moment, often with little information, but trying to do it as evidence-based as they could."
Instead of focusing on Long Covid, the hearings this week will cover Government decisions relating to lockdowns, vaccine mandates, and vaccine safety, and how these key decisions affected things like social division and isolation, health and education, and business activity.
Restaurant Association chief executive Marisa Bidois has been an outspoken voice on the economic toll that successive lockdowns have had on the hospitality industry, especially in Auckland.
She said the restrictions saw multiple businesses close as a result, a hard hit on her industry.
"If there were some different decisions made around the lockdowns, the restrictions in trading, we would still see some of those businesses operating today, no doubt."
At the time, she was an outspoken voice, consistently advocating for change and raising suggestions on how businesses could survive while also balancing public health goals.
She said that while the government's intention might have been to protect public health, the reality felt like a one-size-fits-all approach.
"We did a significant amount of work around the ways to make, like contactless deliveries available at, say, alert level three. Feedback like this, at the time, was ignored, whereas if that would have been taken on board, businesses could have been operating sooner."
The Restaurant Association submitted its feedback in writing and is not currently scheduled to appear at the hearings.
Still, Bidois is welcoming the chance for reflection.
"It's such a critical opportunity to ensure that we learn lessons from that pandemic response so that we can be better prepared, better informed for anything that may come about in the future," she said.
Phase one was originally announced in 2022 by then-Prime Minister Jacinda Ardern; it aimed to examine the lessons learned and help the country better prepare for future pandemics.
The second phase was borne from National's coalition agreements with both ACT and NZ First.
It will cover vaccine approval, safety, monitoring, and mandates; the imposition and maintenance of national and regional lockdowns; The procurement, development, and distribution of testing and tracing technologies and non-pharmaceutical public health material.
Inquiry chair Grant Illingworth said this process was not about placing blame, but instead about learning.
"We are instructed in our terms of reference to avoid legalistic and adversarial processes. We are instructed to try to achieve the purpose of the inquiry, which is not to judge people or to hold them up to public scorn."
Covid-19 lockdowns and vaccines have been the subject of misinformation and controversy in the last few years.
Illingworth explained that the hearings will be live-streamed on the Royal Commission's website, improving accessibility and transparency.
"Obviously we are not in a position to wave a magic wand and ensure that New Zealand is united over this whole issue. But it is, of course, important for us to try to help New Zealand to come together so that we do have an united ability to stand up to any crises in the future."
Part two of the public hearings will take place at the end of August in Wellington and will hear from those who were key decision makers during the pandemic.