Long Covid Inequalities

STIMULATE-ICP (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways) 

Introduction

Long Covid is likely to have significant health inequalities implications. We know that those who are already minoritized and socially disadvantaged in society are more exposed to COVID19. Therefore, they may suffer more from job and income loss, struggle with caring responsibilities and have their illness trivialised if they develop Long Covid.  It is important that those living with Long Covid receive support that is meaningful and equitable. Little is known about health inequalities in accessing Long Covid care and support. It is important to find out who is presenting at Long Covid clinics, what their experiences are and whether they have experienced any barriers, stigma or discrimination. 

We will:

• Review clinic data to find out about the characteristics of those attending Long Covid clinics.
• Collect survey data from patients accessing post-covid care to find out about their experiences of stigma
• Interview patients and health care professionals working in Long Covid clinics to examine experiences of stigma, discrimination and unequal treatment in Long Covid care
• Work with a Community Advisory Board to co-produce a pilot study, aiming to identify and interview individuals living with Long Covid who have not received Long Covid care. Awareness of Long Covid and symptoms, experiences of trying to access care, as well as stigma and discrimination will be explored.

This study is part of the larger STIMULATE-ICP research programme and is funded by the National Institute of Health Research (NIHR). Ethical approval was obtained from South Central - Berkshire Research Ethics Committee (IRAS 303958).  The active case finding sub-study work with the community advisory board is recruiting from the community and therefore is not under the NHS HRA/REC ethics framework. It has research ethics approval from the University of Southampton, reference number 72400.

Where are we now?

We have started interviewing patients from the Long Covid clinics about their experiences accessing Long Covid care, including experiences of stigma and discrimination.

We have set up a Community Advisory Board made up of people living with, or caring for children living with, Long Covid health care professionals (including some health care professionals who are living with Long Covid), voluntary organisations and people who work in Public Health. We have had five meetings so far, we have co-produced our pilot study proposal and we are currently interviewing individuals with Long Covid symptoms who haven’t got a clinical diagnosis about their experiences.

How can I find out more?

If you have any questions about this project, please contact Donna Clutterbuck: d.clutterbuck@soton.ac.uk

Do watch our patient-led video on this part of the study below.