On 25th May, our Facebook Live event hosted by NRAS National Patient Champion, Ailsa Bosworth MBE will be on the subject of Patient Initiated Follow Up (PIFU). The establishment of PIFU pathways is moving quite rapidly. The idea behind PIFU is to give patients and their carers the flexibility to arrange their follow-up appointments as and when they need them. NHS England and NHS Improvement are supporting providers to roll out patient-initiated follow-up (PIFU).

PIFU can be used with patients with long or short-term conditions in a broad range of specialties including dermatology, rheumatology and cancer.

PIFU is not a new concept, and commonly goes by a number of other names which you may have come across before, including open access follow-up, patient led follow-up, patient triggered follow-up, patient-initiated appointments, supported self-managed follow-up, self-managed follow-up, see on symptom, open appointments, open self-referral appointments or patient-activated care.

The approach helps empower patients to manage their own condition and plays a key role in enabling shared decision-making and supported self-management in line with the NHS personalised care agenda. PIFU is part of the outpatients transformation requirements laid out in the 2022/23 Operational Planning Guidance and is a key part of the NHS’ response to the COVID-19 pandemic, helping providers and systems manage waiting lists and to see patients most in need more quickly.

A few rheumatology units have been using this method of follow up for some time. However, understandably in the light of the backlogs caused by the pandemic and the use of remote consultations and remote monitoring, rheumatology units want to be able to prioritise follow up appointments for those whose need is greatest, and so more rheumatology units are investigating how they might be able to set up PIFU. Often you might find that a follow-up appointment may come at a time when you are doing well and don’t actually need to be seen at that particular time, and then there are times when you are flaring and do need to be seen more rapidly. PIFU enables people with RA and Adult JIA to determine when they feel they need to be seen.

We are delighted to welcome 3 consultant rheumatologists on the 25th May to answer your questions about this pathway of care. They know a great deal about PIFU, Dr. Laura Coates, Consultant Rheumatologist from Oxford has assembled a research team to study and evaluate PIFU, of which NRAS is part; Dr. Mark Perry, Consultant Rheumatologist at Plymouth who has an established PIFU pathway in his Trust, which started in 2011 following 2 years in development and piloting and Dr Gavin Cleary Consultant Paediatric Rheumatologist Alder Hey Children’s Hospital.

Please send us your questions in advance so that we can put these to both these experts. You might want to know for example, how do you decide who is suitable to be put onto PIFU, if you haven’t had a consultation for some time, at what point does the hospital contact you? You might ask whether patients will have input into the design of these new pathways of care, or anything else that you want to know.

Please send in your questions for our consultants through the link below.

Please note that we will not be asking live questions on the night so do get your questions in to us as soon as possible.

Deadline for questions is Friday 20th May.

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