Up to one million people in the UK are living with Long COVID, but the 83 dedicated NHS clinics cannot keep up with demand, leaving many without timely care. This matters because Long COVID is not a single, stable condition—it is a fluctuating syndrome involving organ damage and multiple health problems, and no standardised treatment pathway exists across the UK. Patients currently face a patchwork of services, with no dedicated clinics at all in Scotland, Wales, or Northern Ireland. The LOCOMOTION consortium will tackle this by working across three settings: specialist clinics, primary care, and home-based self-management. In clinics, ten UK-wide teams will standardise best practice through a quality improvement collaborative. At home, a digital platform with wearable sensors will track symptom triggers and allow patients to monitor their own recovery using a new patient-reported outcome measure called the C19 YRS. In primary care, the team will use linked data to design cost-effective service models that bring specialist-level guidance to the GP surgery. If successful, the project could deliver a unified, evidence-based NHS Long COVID service that reaches patients earlier, reduces pressure on specialist clinics, and addresses the ethnic and socioeconomic inequalities currently seen in access to care.
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Background: Long COVID (LC) or Post-COVID syndrome affects up to one million people in the UK and is a syndrome of persistent and fluctuating symptoms, with underlying organ dysfunction and multimorbidity. England has 83 dedicated multidisciplinary LC clinics (with no funding yet in Scotland, Wales or Northern Ireland), but these are unable to meet the growing demand and many patients are currently not getting timely care. There is an urgent need to develop a UK-wide efficient integrated LC service. Aim: We will optimise LC management across three settings of care – LC specialist clinics (Workstream WS1); Homes/self-management (WS2) and Primary care (WS3). Methods: WS1: The management options for multisystem medical problems will be standardised to derive best practice guidance using a Quality Improvement collaborative involving embedded clinician researchers from 10 UK-wide LC clinics. Experience-based co-design with patients and healthcare professionals will inform training and resources for both. Ethnic and socioeconomic inequalities of care and vocational challenges of patients will be addressed using qualitative and mixed-methods approaches. WS2: A digital platform incorporating wearable technology will capture symptom fluctuations and individual condition triggers to enable biofeedback for self-management. Core outcomes measures including the first published LC patient-reported outcome measure (C19 YRS Yorkshire Rehabilitation Scale, developed by the co-CI) will be made available on the digital platform for monitoring and directing interventions remotely. WS3: Existing primary care and LC clinic integrated data will aid in developing and evaluating new integrated cost-effective service models that will enable the best practice guidance developed in WS1 to be delivered at point of contact in primary care. We have links with previously funded NIHR LC projects to enable co-learning and maximising impact. PPI/E: Individuals with lived experience of LC have contributed to proposal design and will remain actively involved in all aspects of study through ongoing co-creation.
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