Patient Initiated Follow-Up (PIFU)


Patient Initiated Follow-Up (PIFU) pathways are not new although have not been commonly used. You might have heard of them as Direct Access Clinics or Patient Initiated Return pathways. However, these types of follow-up pathways are being very widely introduced across all conditions including rheumatology. We explain all about it in our SMILE e-learning programme (free to register) in the module ‘How to have the best consultation’ (if you haven’t already registered for SMILE, you can do so here).


A selection of SMILE RA modules in action.

Who is PIFU for?

These pathways are for people who have been diagnosed generally around 1-2 years and are stable on treatment with their disease under good control. They are not intended for people who are newly diagnosed, or who have unstable disease or complex health issues and who need to be seen more regularly.

The NHS understandably wants to reduce unnecessary outpatient follow-up appointments and if you are doing well, it is not best use of your or the NHS’s time to have you attend an appointment with your team when you really don’t need to see them. It makes more sense for that appointment to be given to someone who really does need to be seen at that time.

How does a PIFU pathway differ from ‘usual follow-up care’? 

Rheumatology services have traditionally followed up most of their patients on a routine basis, offering regular ‘check-in’ appointments, every 3, 6, 9 or 12 months dependent upon the individual. This type of inflammatory arthritis management makes up the largest part of a rheumatology team’s workload. However, once stable on medication, many people will have long periods when their condition is well controlled in remission or a very low disease activity state. During that time, many people say that they want to get on with their lives rather than have follow-up appointments which they may see as unnecessary. In addition to placing a burden on patients, traditional models of follow-up increase demand and pressure on rheumatology services.

By contrast, PIFU removes the requirement for people to attend routine outpatient appointments set by their team, when there would be little or no value for them in them doing so. It reduces inconvenience, stress and expense to people, and cost to and the carbon footprint of the NHS. PIFU enables existing patients who are experiencing problems to be reviewed by the specialist in a timely way and it frees up capacity for clinicians to see new patients more quickly.

What does a PIFU pathway look like?

Basically, this means that if you are stable on treatment and have had your disease for at least a year or so, and are deemed suitable for PIFU (and you agree to move onto a PIFU pathway) you would be given a fixed appointment for 12, 18 or maybe 24 months’ time. Prior to that appointment, should you feel you need to be seen by any member of the multi-disciplinary team, you would have been given details of how to contact the team. If you then contact them, usually through the nurse led helpline, you will be able to discuss your issue which may be resolvable over the phone, however, if necessary, a rapid in person review would be arranged. You can also arrange to see other members of the multi-disciplinary team, for example, the Nurse Specialist, Physiotherapist, Occupational Therapist, Podiatrist as well as your Consultant.

Will PIFU pathways be the same in every hospital?

Specific arrangements for PIFU will vary between hospitals and rheumatology teams but your hospital will provide the necessary information should you be considered for PIFU.

You can find out more about PIFU across rheumatology here.

Is there research into PIFU being done?

NRAS is part of the Patient and Public Involvement team (PPI) working with Professor Laura Coates at Oxford, who is Chief Investigator on a clinical trial on PIFU across many rheumatology sites in the UK. The question being asked is: To assess the effectiveness and cost-effectiveness of patient-initiated follow-up (PIFU) compared with standard pre-arranged appointments for people with inflammatory arthritis (IA).

NRAS and the National Axial Spondyloarthritis Society (NASS) have provided PPI representatives for the study team. As part of this work, the British Society for Rheumatology have funded the study team to produce a range of high quality patient and health professional educational resources to support patients moving onto PIFU pathways and the health professional teams who are rolling out PIFU in rheumatology. A central part of these resources is a short animation about PIFU which you can watch below as well as download and edit key pdfs for your patients.

We are launching the full suite of resources on World Arthritis Day (WAD) 12th October 2024 and you can read our joint WAD briefing document here:

Watch now

An Introduction to PIFU (Patient Initiated Follow-Up)

We also have this video available with subtitles in other languages:

Punjabi | Urdu | Polish | Welsh | Romanian | Cantonese


Below is a downloadable and editable pdf of Frequently Asked Questions for people with Inflammatory Arthritis. Health Professionals can download and edit this pdf with local information about how PIFU is being managed in their unit and insert local team contact details etc. which can then be uploaded to their own hospital website and/or emailed to their patients, or printed for handing out in clinic.

FAQ’s PDF

A patient leaflet highlighting the key aspects of PIFU and illustrating the PIFU pathway is available and can be downloaded.

Patient leaflet

For Health Professionals

The study team have also developed a health professional pack for rheumatology health professionals who are intending to roll out or have already rolled out PIFU in their departments which includes examples of best practice.

Download the HCP pack here:

Health Professional FAQs

NRAS in 2023

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