Background Approximately 10% of patients with Covid-19 experience symptoms beyond 3–4 weeks. Patients call this “long Covid”. We sought to document such patients’ lived experience, including accessing and receiving healthcare and ideas for improving services. Methods 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 stories and comment on others’ stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, clinical relationships, access, and service redesign. Results Of 114 participants aged 27–73 years, 80 were female. Eighty-four were White British, 13 Asian, 8 White Other, 5 Black, and 4 mixed ethnicity. Thirty-two were doctors and 19 other health professionals. Thirty-one had attended hospital, of whom 8 had been admitted. 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). Emotionally significant aspects of participants’ experiences informed ideas for improving services. Conclusion Suggested quality principles for a long Covid service 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. Trial registration NCT04435041.

Research must be done urgently to fill the many gaps in this new “living guideline”

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Persistent symptoms lasting longer than 3 weeks are thought to affect 10-2 0% of patients following SARS-CoV-2 infection. No formal guidelines exist in the UK for treating patients with long COVID and services are sporadic and variable, although additional funding is promised for their development.In this study, narrative interviews and focus groups are used to explore the lived experience of 43 healthcare professionals with long COVID. These individuals see the healthcare system from both professional and patient perspectives, thus represent an important wealth of expertise to inform service design. We present a set of co-designed quality standards, highlighting equity and ease of access, minimal patient care burden, clinical responsibility, a multidisciplinary and evidence-based approach, and patient involvement; and we apply these to propose a potential care pathway model that could be adapted and translated to improve care of patients long COVID.

Background: In the absence of research into therapies and care pathways for long covid, guidance based on “emerging experience” is needed. Aim: To provide a rapid expert guide for GPs and long covid clinical services. Design: Delphi study. Setting: Primary and secondary care doctors. Method: The authors generated recommendations pertaining to the investigation and management of long covid. These were distributed online to a panel of UK doctors (any specialty) with an interest in, lived experience of, and/or experience treating long covid. Over two rounds of Delphi testing, panellists indicated their agreement with each recommendation (5-point Likert scale) and gave comments. Recommendations eliciting a response of “strongly agree”, “agree”, or “neither agree nor disagree” from ≥90% of respondents were taken as showing consensus. Results: Thirty-three clinicians representing 14 specialties reached consensus on 35 recommendations. Chiefly: GPs should consider long covid in the presence of a wide range of presenting features (not limited to fatigue and breathlessness) and exclude differential diagnoses where appropriate. Detailed history and examination with baseline investigations should be conducted in primary care. Indications for further investigation and specific therapies (for myocarditis, PoTS, mast cell disorder) include hypoxia/desaturation, chest pain, palpitations, and histamine-related symptoms. Rehabilitation should be individualised, with careful activity pacing (to avoid relapse) and multidisciplinary support. Conclusions: Long covid clinics should operate as part of an integrated care system, with GPs playing a key role in the multidisciplinary team. Holistic care pathways, investigation of specific complications, management of potential symptom clusters, and tailored rehabilitation are needed.

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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.

Persistent symptoms lasting longer than 3 weeks are thought to affect 10-20% of patients following Covid 19 infection. No formal guidelines exist in the United Kingdom for treating ‘long Covid’ patients and services are sporadic and variable, although additional funding is promised for their development.In this study narrative interviews and focus groups are used to explore the lived experience of 43 healthcare professionals with long Covid. These individuals see the healthcare system from both professional and patient perspectives thus represent an important wealth of expertise to inform service design.We present a set of co-designed quality standards highlighting equity and ease of access, minimal patient care burden, clinical responsibility, a multidisciplinary and evidence-based approach, and patient involvement and apply these to propose a potential care pathway model that could be adapted and translated to improve care of long Covid patients.Summary boxWhat is known?▪Persistent symptoms (“long Covid”) occur after Covid-19 in 10-20% of sufferers▪Services to manage and rehabilitate patients with long Covid are not yet optimal▪UK healthcare workers experience at least a threefold greater risk of Covid-19 infection and face significant occupational exposure▪Healthcare workers with long Covid can offer important insights into service design and developmentWhat is the question?▪What are the experiences of healthcare workers with long Covid and what are the implications from these for service development?What was found▪Healthcare workers experienced a confusing novel condition that imposed high levels of uncertainty and a significant personal and professional impact.▪Using professional contacts, patient- and professional Mindlines, support groups and Communities of Practice all helped to minimize this uncertainty and high quality therapeutic relationships were essential to cope with it.▪Many experienced a lack of compassion during interactions with the healthcare system and were frustrated by challenges accessing, or absence of, appropriate services.▪Suggestions for improvement included an integrated, multi-disciplinary assessment and rehabilitation service; a set of clinical quality standards; and co-created research and service development.What is the implication for practice now?▪This study supports and extends the principles outlined in recently-developed NHS long Covid quality standards and will inform and support design of dedicated long Covid services.