About the project

Between 1–2 million people in the UK experience multiple ongoing symptoms following COVID-19 infection, often for several weeks or months. Patients call this ‘Long COVID’ (LC). Ongoing COVID-19 infections and unvaccinated groups mean people are at ongoing risk of developing LC. LC is not higher for ethnic minorities, compared with White people, despite these groups suffering more from COVID-19. However, racism, stigma and discrimination combined with varying beliefs about causes of disease, and a lack of shared language to describe disease, mean people from ethnic minorities may under-report and/or not identify as having LC. Healthcare services struggle to incorporate non-White perspectives, so it is not surprising that people from ethnic minorities report more unsatisfactory health care and treatment compared to White people. They may also turn to other support networks and systems (related to culture or religion and among family, friends, non-healthcare professionals and faith communities) instead of traditional healthcare to manage health problems.

This project aims to raise awareness of people’s daily experience of LC, including:

  • how people interpret their symptoms
  • what support and treatment they prefer or desire
  • the day-to-day impact of LC on their lives (ie jobs, relations, homes)
  • the support systems and networks used
  • what sources of healthcare support are available and valued
  • what difficulties must be overcome to access them

The project is working with those living with LC, healthcare professionals and other key stakeholders to:

  • advise how healthcare services can be better shaped to support access to quality healthcare
  • improve patient-care and self-management
  • inform delivery and/or develop tailored support within healthcare, to improve health and wellbeing, reduce unequal healthcare access and promote culturally appropriate healthcare

The findings will be shared using artwork and videos (developed with LC patients) and articles with different groups, including patients, healthcare professionals, voluntary/community groups, non-health professionals and commissioners, and policy makers.  These will inform training for health professionals.

Partners

University of Southampton University
Keele University
Queen Mary University of London

Funding body

National Institute for Health and Care Research (NIHR)

Investigators

Nina Smyth
Damien Ridge