On Long COVID Awareness Day this year Dr Nina Smyth and Professor Damien Ridge, along with fellow academics, have launched a website for long COVID support to help those living with the condition.
The online tool offers a symptom checker, advice on seeking support and encourages people to talk about their symptoms with professionals, friends and family. It is part of the STIMULATE-ICP Study, the largest UK clinical study of long COVID to date, led by University College London Hospitals NHS Trust and University College London, as well as research findings from the HI-COVE study, led by the University of Westminster, which focused on the impact of long COVID in minority ethnic groups.
The tool is primarily aimed at people who may have long COVID but are not currently accessing care, but may also be helpful to those who are. It aims to encourage people with probable long COVID to seek support from the NHS or other services. It covers topics of self-doubt, stigma and effects on mental health as well as offering resources, tips and advice on next steps.
The tool is also aimed at doctors and other professionals, such as social workers, social prescribers, allied health professionals and pharmacists, as well as community groups and voluntary organisations, to raise awareness about the difficulties people may face when considering reaching out for a health consultation or community support.
Nisreen Alwan, Professor of Public Health at the University of Southampton, who was made an MBE in 2021 for services to medicine and public health during the pandemic, has led the development of the online tool using research she and colleagues have conducted into the stigma and barriers to seeking care for long COVID.
Long COVID is a global public health problem affecting millions of people to varying degrees. In March 2023, the Office for National Statistics estimated that 1.9 million people were living with Long COVID in the UK.
Both the HI-COVE and STIMULATE-ICP studies are funded by the National Institute for Health and Care Research (NIHR).
Professor Damien Ridge, Professor of Health Studies at the University of Westminster, who worked on the HI-COVE study which has informed the Online tool for long COVID support, said: “Seeking healthcare and support is important for those who suspect they might have long COVID. But this can be especially difficult for some ethnic minorities, as there might be a stigma attached to COVID in their communities. They might also have less trust in healthcare than white patients. This tool is built on a wide range of patient accounts, and so could help a range of people who face these kinds of worries.”
Dr Nina Smyth, Lead Researcher for HI-COVE and Reader in Health Psychology at the University of Westminster, added: “The HI-COVE study focused on understanding the lived experiences of people from ethnic minority backgrounds living with long COVID, to understand healthcare and support experiences and needs better. People from ethnic minority backgrounds face additional burdens in accessing healthcare and support.
“The stigma attached to long COVID and previous healthcare encounters are barriers to seeking support from healthcare and community support. It is hoped the tool will be helpful to people from diverse backgrounds living with long COVID and people with other conditions.”
The Long Covid Care website is now live.
Find out more about the School of Social Sciences at the University of Westminster.
