Developing services for long Covid: lessons from a study of wounded healers

Abstract 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 box What 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 development What 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.