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Abstract Background Approximately 10% of patients with Covid-19 experience symptoms beyond 3-4 weeks. Patients call this “long Covid”. We sought to document the lived experience of such patients, their accounts of accessing and receiving healthcare, and their ideas for improving services. Method We held 55 individual interviews and 8 focus groups (n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their personal stories and comment on others’ stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, the clinical relationship, access to care, and service redesign. Results The sample was 70% female, aged 27-73 years, and comprised White British (74%), Asian (11%), White Other (7%), Black (4%), and Mixed (4%). 27 were doctors and 23 other health professionals. 10% had been hospitalised. 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 felt “fobbed off”); and possible critical events (e.g. deterioration after being unable to access services). Emotional touch points in participants’ experiences informed ideas for improving services. Conclusion 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. Study registration NCT04435041

Original publication

DOI

10.1101/2020.10.13.20211854

Type

Journal article

Publication Date

14/10/2020