Approximately 10% of patients with COVID-19 experience symptoms beyond 3–4 weeks. Patients call this 'long covid'. Greenhalgh et al. sought to document the lived experience of such patients, their accounts of accessing and receiving healthcare, and their ideas for improving services.
They held 55 individual interviews and 8 focus groups with people recruited from UK-based long Covid patient support groups, social media and snowballing.
Participants were invited to tell their personal stories and comment on other stories.
Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others described feeling fobbed off); and possible critical events (e.g. deterioration after being unable to access services).
The authors conclude that quality principles for a long Covid service should include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.