Successful use of patient initiated follow-up in a tertiary paediatric rheumatology service

Background/Aims Patient initiated follow-up (PIFU) is a national strategy enabling patients or carers to initiate contact with a service rather than a traditional model of routine scheduled appointments. PIFU enables patient empowerment and elective recovery after the Covid-19 pandemic. NHSE identified Paediatrics as appropriate for PIFU, but specific measures are needed to ensure safeguarding of paediatric patients is maintained. Methods With NHSE & I support and extrapolating guidance implementing PIFU in adult rheumatology services, we developed a clinical pathway that included safeguarding/governance structures within Paediatric Rheumatology at Alder Hey Children's Hospital. Two strategies were developed - PIFU culminating with either a timed return (PEND) or discharge (DISCHARGE) model. A PIFU feasibility study in paediatric rheumatology initially targeted three index conditions (arthritis, mechanical pain and primary Raynaud's) in March 2022. This was extended within a Plan-Do-Study-Act model of Quality Improvement. Results We placed 536 patients within PIFU pathways (PEND = 297, DISCHARGE = 239). The monthly usage of PIFU increased from <10 patients per month in March 2022 to > 40 patients per month in August 2023 with expansion of PIFU conditions. Within this time frame the number of patients put through the DISCHARGE model increased steadily to 60% of the monthly proportion as clinician confidence in PIFU increased. We demonstrate an 11% (total Rheumatology patients) PIFU rate over the study time frame, with a 2.7% (15/536) reactivation rate. Where calculable, timescale for review following activation was <48 hours. In our experience, patients/families are comfortable with PIFU and feel reassured by the safety-net provided. Decision for PIFU PEND/DISCHARGE is made in partnership with patients/families. As well as increased use within Rheumatology, PIFU use has extended to 80% of clinical teams across Alder Hey. The Trust-wide PIFU rate of 10% in September 2023 is double the original NHS England guidance target of 5%. Conclusion We advocate safety of PIFU in the correct population and its ability to empower patients. Table 1 shows the significant impact that correct use of PIFU can have on increasing capacity for seeing new patients, decreasing time to review and matching the number of patient reviews to referrals.