Preprint paper here: Persistent symptoms after Covid-19: qualitative study of 114 long Covid patients and draft quality criteria for services Emma Ladds, Alexander Rushforth, Sietse Wieringa, Sharon Taylor, Clare Rayner, Laiba Husain, Trisha Greenhalgh This article is a preprint and has not been certified by peer review [what does this mean?]. It reports new medical research that has yet to be evaluated and so should not be used to guide clinical practice. https://www.medrxiv.org/content/10.1101/2020.10.13.20211854v1 PDF: https://www.medrxiv.org/content/10.1101/2020.10.13.20211854v1.full.pdf 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 other 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. Approximately 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 described feeling fobbed off); and possible critical events (e.g. deterioration after being unable to access services). Emotional touch points in participant 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. Competing Interest Statement TG is currently sitting on the oversight group for the long Covid guideline at the National Institute for Health and Clinical Excellence. TG and EL provided evidence to the House of Lords Select Committee on long Covid. CR and ST are members of a long Covid patient support group. Other authors have no relevant interests to declare. Clinical Trial NCT04435041 Funding Statement This research is funded from the following sources: National Institute for Health Research (BRC-1215-20008), ESRC (ES/V010069/1), and Wellcome Trust (WT104830MA). Funders had no say in the planning, execution or writing up of the paper. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Leicester Central Research Ethics Committee (IRAS Project ID: 283196; REC ref 20/EM0128) All necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes Paper in collection COVID-19 SARS-CoV-2 preprints from medRxiv and bioRxiv Edited to remove DOI URL as given on the paper's webpage, as URL does not point.