Patients’ experiences of “longcovid” are missing from the NHS narrative

Summary

A group of doctors who have chronic COVID-19 symptoms have been digesting information on social media platforms from thousands of individuals in the UK and worldwide affected by covid symptoms for 16 weeks or more. Some of these symptoms and patients’ experiences have been summarised in a video “Message in a bottle—long covid SOS.” The announcement of an NHS portal for patients who have been admitted to hospital or dealt with the illness at home is a welcome signal that the problems of long standing covid symptoms are starting to be recognised.

In this BMJ article, the authors explore these patients' experiences and urge that the new NHS portal should be co-created with by patients with COVID-19 and carers. There needs to be some bidirectionality in the creation of this service and subsequent research to avoid institutional “top down” blind spots about the condition.