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As services move to the recovery phase, the focus has shifted to looking for innovative solutions for delivering care in the context of backlogged elective services and the continued need for social distancing. NHS services across the UK are thinking about how to manage and prioritise their patients using Patient Initiated Follow Ups (PIFUs).


PIFUs are one tool in this recovery plan, empowering patients via shared decision-making, giving patients responsibility for booking follow-up appointments when they need them. Patients can book appointments to coincide with a flare or change in condition.


PIFUs can reduce demands on services by reducing follow-up appointments that are not clinically necessary and helps clinicians prioritise caring for patients with urgent clinical need. This approach coupled with risk stratified waiting lists can help services manage the demands of recovery.


The society, among other specialties coordinated by the RCP, has responded to a consultation on new NHS guidance on Patient Initiated Follow Ups. Our Clinical Affairs Committee responded on behalf of the society, communicating our support for PIFUs within rheumatology. The guidance clearly acknowledged the need for careful patient selection and generally that PIFUs will not follow a one-size fits all approach.


In response to the consultation, we've highlighted the following areas which will require careful consideration to ensure that PIFUs are safe and effective in the specialty:


  • Careful patient selection is required, as not all rheumatology patients are suitable for PIFUs. Safety nets are needed to ensure a review takes place every 1-2 years depending on a variety of patient and clinical factors

  • Remote patient-reported outcome measures (PROMs) are essential to enable clinicians to quantify rheumatological disease activity and severity to make appropriate management decisions. BSR aims to launch a platform to support PROM collection shortly

  • Patient education ensures the confidence of patients in self-management and is essential to PIFU uptake. Patients need to be comfortable assessing their condition and to know when to request an appointment. However, patient education may require extra resource to deliver

  • Rheumatology services need to work with commissioners to remove some of the appointment requirements needed to approve ongoing funding of high-cost drugs. For example, CCGs that require patients on biologic and targeted drug treatments receive six-monthly clinical reviews.


Next Steps

BSR is producing rheumatology-specific guidance on PIFUs to assist services in implementing this in their recovery planning. Rapid implementation of PIFUs will depend on the confidence of clinicians and patients. We'll update members on progress; in the meantime please get in touch with our Policy team with your views.