‘Systemic failure’: Experts worry about long-term support for COVID-19 patients

More than a year after the government set up a top-level advisory group on the long coronavirus, leading experts fear patients are still disappointed with the health care system.

Such concerns have been broadcast in a series of programs Video interview just releasedAs the Ministry of Health says, it is impossible to quantify the number of people living with post-virus conditions today.

A series of persistent symptoms believed to accompany 10-20% of infectious diseases, Long Covid can affect nearly every organ system in our body, yet it remains universal. There is no established treatment or cure.

a Major studies published earlier this year One in five participants reported long-lasting COVID-19 symptoms after initial infection, and many patients still struggled to seek help, the study found.

They also noted concerns over the apparent lack of understanding of the condition by physicians, and the ministry is working to address the issue with clinical guidelines and resources.

in the meantime, Charity “ME Support” has released a unique, free and comprehensive online tool to help COVID-19 “long haulers” get diagnosed, manage symptoms and access support.

As part of that research, the group conducted interviews with New Zealand’s leading researchers in the field, which have now been published online.

Warren Tate, Professor Emeritus, University of Otago – last year led the research Investigating how postviral fatigue syndrome becomes a life-changing illness, Long coronavirus ‘incredibly resembles’ myalgic encephalomyelitis/chronic fatigue syndrome (ME/CYF) said.

However, Tate said there has been “a lukewarm response at best” when it comes to extending current health efforts targeting long-corona to ME/CYF patients.

Patients also face unfair access to treatment, said Dr Anna Brooks, an immunologist and long-corona researcher at the University of Auckland.

“While some people report receiving adequate care, others are left with advice that is inappropriate or outdated and potentially harmful,” she said.

“Furthermore, the inability of some to continually seek care, and the abandonment of others, does not indicate a lack of demand for care. is not.

“Rather, it highlights systemic flaws that have let us down.”

Brooks also noted that long coronaviruses are more associated with delta than omicron, even though studies have shown that long coronaviruses can develop regardless of the initial variant of infection or vaccination status. I was also concerned about the perception that

“Certainly, surviving one infection unscathed does not mean that you will not get the long coronavirus,” she says.

“Second or third exposure can cause the disease. Omicron and its variants are likely to represent the largest burden of long-coronavirus infections in our country.”

Dr Mona Jeffries, an epidemiologist at the University of Victoria who co-led New Zealand’s largest long-corona study, said few of the patients involved in the study received referrals to secondary care.

“There have been many stories of people who were referred by primary care providers on their behalf but were not accepted.”

One patient who developed long coronavirus after being infected last February said: Herald They had to switch from their doctor of 12 years to get the help she needed.

“I’m sad I had to leave…but they didn’t help me. It was too painful.”

Another long-term traveler said he had trouble finding care.

“If you don’t have curiosity and you have a healthcare system in place to give you answers, if you don’t fit the bill and the healthcare system doesn’t have the answers, it’s going to be a very difficult situation,” she said. I was.

“It’s a bit like having a mental illness or some other invisible disability.”

ME Support vice president Kate Duder said her organization is grateful that its membership has doubled in recent years. Actions taken by the government so far“But there is still much more to be done.”

The ministry had set up a long-coronavirus expert advisory group to develop clinical guidelines, but the response team was disbanded in November and “no response” since, Duder said.

“We seem to be looking to studies abroad to justify our work here in New Zealand, but given our unique environment and the ongoing risks posed by COVID-19, , we need to consider what the actual needs are here,” she said.

“New Zealand was once a world leader in responding to COVID-19. As the world continues to grapple with how to live with the virus, we have the power to help those fighting the long-term effects of COVID-19. We have a real opportunity to lead the world in how we help.”

Duder identified a number of areas where her group would like action.

This will include establishing a working group between Te Whatu Ora and the ME/CFS and Long Covid communities, sizing the burden, examining barriers and conducting government reviews to increase clinician training. This includes outsourcing.

They also called for increased funding for research and support groups, and for the formal classification of ME/CFS as a disability.

Hundreds of thousands of kiwis have been suggested to be affected, a ministry spokesman told the newspaper. Herald At this stage, it was not possible to determine the exact number of people infected with Long Covid.

The ministry was “actively helping” clinicians to identify and manage long coronavirus by advising and providing guidance to long coronavirus patients and their caregivers.

Asked if more clinical training is needed, a spokesperson said the ministry is “increasing awareness” of the long coronavirus and the recently introduced clinical coding will help it better understand its impact here. said he would.

“This helps us plan for ongoing service and training.”

Since Long Covid included a wide range of conditions that may require care and treatment by a variety of specialists, GPs are “in the right position” to work with patients and refer patients as needed. It was in

Dr Luke Bradford, Medical Director of the Royal New Zealand College of General Medicine, acknowledged that GPs continue to face challenges with patients presenting with long-term COVID-19 symptoms.

“But the frustration there isn’t that diagnosis is the problem … really, it’s that there aren’t many treatment options and research is still conflicting about where to go.”

Tauranga GP expected the situation to improve as further research progressed.

As it stands, current treatment approaches come down to helping patients recognize their symptoms and manage them in the best way for them, he said.

“But if you live like that every day, it’s frustrating, isn’t it?”

An Auckland mother is desperate to introduce New Zealand to a clinic dedicated to people suffering from long-term COVID-19.

months ago, Herald He told Viv Allen about his daughter Rosewho are suffering from long corona.

when Herald Allen, who spoke with her yesterday, was happy to report Rose’s condition was “improving”, but said her condition was still “behind the door” and needed further support.

“So she started to improve a little bit, which is great. She’s less sensitive to light and sound, she can speak a little more, she can move a little more,” Allen said.

“She’s still tired and it often happens that she’s good one week and not so good the next. But the trajectory is improving and there’s still a long way to go.”

While Rose is now on the “rehabilitation road”, there is a growing shortage of facilities and trained professionals in New Zealand to help people like her daughter who are suffering. It was clear to Allen.

“No, no help. No financial help other than unemployment benefits. It seems strange to me,” Allen said.

“The mental health team is supporting Rose and she has been suggested to undergo cognitive behavioral therapy with a psychologist. I am trying to arrange that, but it is really difficult.”

“We still pay, we still, she has a physical therapist three times a week.”

Allen hopes to have similar support to those in Australia and the UK, which have long-term COVID-19 clinics.

“The whole group of physiotherapists, psychologists, psychiatrists, doctors, and occupational therapists can team up and work in a team environment to gain experience and help long-term COVID-19 patients,” Allen said. said Mr.