Approximately 700,000 people in the UK are living with rheumatoid arthritis (RA). RA is a chronic autoimmune disease that causes inflammation around the body, significantly affecting the hands and wrists, causing severe joint pain.
While there is no cure for RA, people affected by it will rely on access to NHS services for the remainder of their lives. Rheumatology care is predominantly provided in outpatient settings, but there has been a recent focus on implementing Patient-Initiated Follow-Up (PIFU) pathways to enhance patient care and support.
The PIFU pathway allows patients to arrange their follow-up appointments as and when they need them, based on their own symptoms and needs. This system presents a different way of managing appointments, which would normally be arranged routinely, by offering patients more control of their care. With PIFU, patients can have appointments when they need help, and they do not have appointments when they feel they do not need them. If their rheumatology team do not hear from patients after an agreed amount of time, they will get in touch to find out how they're doing. This means that patients do not lose contact with their rheumatology team throughout the pathway.
This system helps reduce unnecessary outpatient hospital appointments, allowing patients to skip visits when they feel it's not needed, while also freeing up NHS time and resources to focus on patients who require urgent care.
Patients can view full details and resources here.
NDORMS NIHR Clinician Scientist and Senior Clinical Research Fellow, Dr Laura Coates, has led the co-production and co-creation of educational materials to support health professionals and patients with a high-quality implementation of PIFU across Rheumatology Services.
Kindly funded by the British Society of Rheumatology, Dr Coates' team has worked with people with lived experience of rheumatological conditions and organisations representing the interests of people with lived experience, clinicians and researchers with expertise in PIFU, and colleagues from NHS England, to deliver an optimal PIFU toolkit to which is now available for use by NHS organisations.
To help reach a broader patient audience, these resources have been translated into multiple languages, including Punjabi, Romanian, Urdu, Polish, and Cantonese. This ensures that patients from diverse backgrounds can access the information they need to manage their care effectively.
'Shared decision making is a critical key to a successful PIFU service, and an important role is played by accessible high-quality educational materials to help patients decide what management is best for them. With this toolkit we have responded to the previous lack of supportive practical educational materials, by producing high-quality understandable information to help both teams and patients identify the best ways to use PIFU,' explained Laura.