‘Lost time’. Patients with Early Inflammatory/Rheumatoid Arthritis and their experiences of delays in Primary Care

Background \ud Early referral forms a crucial part in early inflammatory/rheumatoid arthritis (EI/RA) recovery. Delayed decisions to refer can lead to severe incapacity and emotional distress for individuals and family and feelings of lost time. How patients with EI/RA experience early referral decisions in Primary Care is an under explored area and warrants further investigation. \ud Aim: To explore how patients newly diagnosed with EI/RA experienced their early contacts with Primary Care as they negotiated their journey through the referral process into secondary care. \ud Design and setting \ud Qualitative face to face interviews with newly diagnosed EI/RA patients \ud Methods: In-depth semi-structured interviews were conducted to explore patients’ experiences of referral from first symptoms to GP referral All participants were interviewed within two weeks of being diagnosed in Secondary Care. Data analysis was conducted using Interpretative Phenomenological Analysis (IPA). \ud Findings: All participants in this study described having experienced struggles with their navigation through Primary Care towards diagnosis and specialist EI/RA services. This struggle comprised 5 key elements: ‘Family persuasion, ‘Lack of continuity in care’, ‘Pushing for referral’, ‘Straining relationships’, ‘Lost time’. \ud Conclusion: The delays experienced by patients when attempting to reach an early referral decision in Primary Care cause frustration for those presenting with EI/RA, partly because they do not feel heard. There is a significant impact on patients and their families when referral to specialist care is delayed.