Long Covid Project

Long Covid is a relatively new condition, and it refers to the persistence of symptoms attributed to COVID-19 for more than twelve weeks after initial infection. These symptoms typically include extreme fatigue, breathlessness and muscle weakness, but symptoms can vary and include other health issues. Given the newness of the condition, conducting thorough research on this condition was identified as a key priority by the NHS, which was outlined in the Long Covid Plan for 2021/2022. 

One of the gaps in information is understanding the lived experience of people from marginalised communities living with Long Covid. This includes understanding awareness of the condition itself, needs and experiences of accessing care. 

Inequality-focused organisations

To address this information gap, the National Voices’ Long Covid project brought together six organisations who serve different community groups. These organisations are inequalities-focused voluntary, community and social enterprise (VCSE) organisations who aim to develop community-focused support to support existing clinical Long Covid pathways. The project had three aims: 

• To harness the crucial role of VCSEs in providing Long Covid support 
• To co-produce solutions with those affected by Long Covid 
• To create an open-circuit peer support group with the six key organisations. 

Throughout this project, four themes emerged around which the foundations of Long Covid support should ideally be built. These were awareness, connection, access and quality. 

Many of the barriers to accessing support for Long Covid from the groups that we worked with were not exclusive to Long Covid. In fact, most participants reported that they found similar issues in other parts of the health and care system. 

Key recommendations

Our recommendations from this work include: 

• Effective engagement – Promote the use of ‘plain English’ language and account for special circumstances in communication methods. 
• Stronger as a collective – Increase the use of network working as a method for conducting community-based research and improve community engagement with public health interventions. 
• Next steps for Long Covid – Provide further funding and resources towards researching the effect, impact, and management of Long Covid. 

Read our learning report, published in partnership with PPL, here.

Acknowledgements

We would like to thank our project partners and our members who contributed to this work. These partners include Asthma + Lung UK, South Asian Health Action, Race on the Agenda, Groundswell, Derbyshire Gypsy Liaison Group, Self Help UK & People First.