What does paediatric rheumatology care in England look like? A cross-sectional analysis as part of the Getting It Right First Time Programme

Objectives The 2025 Paediatric Rheumatology Getting It Right First Time (GIRFT) National Report highlighted variation in service provision across England. Understanding current care pathways is essential to support equitable access and optimise outcomes for children and young people (CYP) with rheumatic conditions. We describe outpatient paediatric rheumatology activity across all commissioned and non-commissioned care providers in England. Methods Hospital Episode Statistics outpatient data for from April 2023-April 2025 were extracted for encounters coded to rheumatology or paediatric rheumatology for patients aged ≤17 years. Descriptive analyses examined patient-level characteristics, referral sources, and appointment types alongside diagnostic and procedural coding. Results A total of 174,093 encounters involving 41,115 patients were identified. Most encounters (131,355, 75.5%) was delivered by commissioned providers, with the remainder by 113 non-commissioned providers. Median age was 13 years (IQR 9–16). Fewer than half of new referrals originated from general practice. Diagnostic and procedural coding was missing in approximately 85% of encounters. Conclusion Paediatric rheumatology care is predominantly delivered to older CYP and occurs both within and outside commissioned providers, highlighting the need for strong regional collaboration to ensure equitable access to specialist multi-disciplinary care. The high proportion of referrals from outside general practice suggests persistently complex referral pathways. Education to raise awareness of JIA and referral guidance should therefore target clinicians most involved in early pathways. Improving outpatient diagnostic coding is essential to enable case mix analysis, service planning and evaluation of inequalities across providers.