More support for people with Long COVID needed in Aotearoa
The health system needs to work better if it’s going to meet the needs of the large number of people expected to have Long COVID in the months to come, according to the preliminary results of a study led by Faculty of Health researchers at Te Herenga Waka – Victoria University of Wellington.
Senior Research Fellow in the Health Services Research Centre— Te Hikuwai Rangahau Hauora Dr Mona Jeffreys said it was becoming clear the health system had already “badly let down patients who are living with Long COVID”.
She is one of a number of experts speaking at an online symposium, Long COVID: Journeying together through the fog, on Wednesday 25 May.
Dr Jeffreys, along with colleagues and senior research fellows Dr Lynne Russell and Dr Marianna Churchward who will also be speaking at the symposium, are conducting a Ministry of Health-funded study on people in Aotearoa who had COVID-19 before December 2021.
Among 150 people with Long COVID, about half of respondents (44 percent) reported not being listened to, while 52 percent said they were not understood, Dr Jeffreys said.
A similar proportion (43 percent) stated their GP didn’t know what to do next, or that they asked for help and didn’t get any support (32 per cent). Māori reported broadly the same issues as non-Māori, although a high proportion of Māori stated they did not know who to ask for help or support (52 percent).
The study will be providing recommendations for how the system can be improved to better support those with COVID, including Long COVID.
As the Ministry of Health grapples with the expected large number of cases of Long COVID in coming months, the system must be properly funded to provide evidence-based care.
“People with lived experience of Long COVID are experts, they have great recommendations regarding how services could be better aligned with the help that they need.
“The patients we have spoken to say they want clear clinical pathways, an acknowledgement that we do not know enough about Long COVID, better information for GPs….
“Ongoing analysis shows us that mental health support is also vital. Levels of reported anxiety were high.”
Convening the symposium is Dr Rob Griffiths, from the University of Otago, Wellington.
Dr Griffiths said that with at least one in five people expected to experience symptoms more than three months after being infected with COVID‑19, government agencies should urgently develop plans to provide ongoing support.
“The addition of Long COVID to New Zealand’s existing chronic disease burden is likely to be significant, and we don’t yet know how large the problem will be; there are so many unknowns.”
The symposium is being organised by Te Whare Whakamātūtū, the Rehabilitation Teaching and Research Unit in the Department of Medicine at the University of Otago, Wellington, in collaboration with Te Herenga Waka—Victoria University of Wellington and AUT’s Centre for Person Centred Research.
Dr Griffiths said that while some people with Long COVID could be supported to learn to manage the condition themselves, many would need to work with their community and primary care providers. Others may suffer more serious symptoms, such as cardiac complications, and need high-level specialist care.
“A whole range of services will be needed, from supporting people to self-manage the condition, to providing adequate and accessible resources for navigating primary and specialist care. We urgently need to look at how you bring all those services together, not just health services, but also social support and disability services. Particular attention is needed for those most likely to experience inequity of access, experience and outcomes in health, social and disability services, such as Māori, Pasifika and rural people.
“The Ministry of Health is currently reviewing its framework for services for people with Long COVID, and this symposium offers them a range of perspectives and voices that can inform its review. The Māori Health Authority and Health New Zealand will share their thoughts on moving forward at the close of the symposium.”
The symposium runs from 9.30am to 4pm with short, sharp presentations from national and international experts from a wide range of disciplines, including physiotherapy, primary health care, psychology and occupational therapy. Advocate Jenene Crossan will also speak about the experience of living with Long COVID.
Anyone can register for free here.