If you have been treated through the NHS for a hand, wrist, elbow or shoulder condition, at some point during your treatment journey, you may have been placed on Patient Initiated Follow-Up, sometimes referred to as PIFU. In some cases it will be explained to you that you are on PIFU and what to do next and in other cases it will not. In effect, hands on treatment is now on hold and it is up to you to get back in touch with the service if things get worse or do not improve. For some patients and conditions, this works well. For others, it could create a significant and invisible barrier to getting the care needed.

What is PIFU?

Patient Initiated Follow-Up is a model of care in which the patient, rather than the clinician, decides when and if they need to return for a follow-up appointment. Instead of being given a scheduled review, the patient is placed on open access, with instructions to contact the service if their condition worsens or fails to improve. If no contact has been made within a set period, in some cases as little as 6 weeks, the patient will be automatically discharged.

PIFU is not a formal discharge. The patient technically remains within the service and can re-activate their care by making contact. But in practical terms, there is no clinician actively monitoring your progress, no scheduled check-in and no prompt to seek help. The responsibility sits entirely with you. In theory, it empowers patients and frees up capacity for those who need it most.

The scale of adoption is significant. By March 2023, around 185,000 patients per month were being placed on PIFU pathways across NHS England, triple the number from two years earlier. Trauma, Orthopaedics and Physiotherapy alone account for 35% of all transfers, making it highly relevant to anyone being treated for a hand, wrist, elbow or shoulder condition.

Why is PIFU used?

NHS outpatient services in some cases can face significant demand. Routine follow-up appointments may result in patients being signed off anyway because they have recovered as expected. PIFU was in large part introduced to target those follow-up slots more efficiently.

From a service management perspective, it makes sense. A patient who is recovering well does may not need to take up a clinic appointment. PIFU may allow clinicians to focus on those who are not progressing, while giving recovered patients a safety net if problems arise.

Where PIFU falls short

The PIFU model puts a significant onus and burden onto the patient, who in turn will recognise when they need help and feel confident enough to ask for it.

In my private practice, it is not uncommon for patients to have been placed on PIFU. In turn have then refrained from contacting the service when they should and are entitled to. Research and clinical experience consistently show that patients underuse PIFU for reasons that have little to do with their clinical need.

A 2024 evaluation by the National Institute for Health and Care Research (NIHR) confirmed this. It found that patients on PIFU pathways were frequently unaware of their PIFU status, confused about how to access services and even more crucially — reluctant to make contact out of concern about “bothering” clinicians or fear of being unable to get an appointment when genuinely needed. This was not an incidental finding. It was listed as one of the official risks of the model.

The psychology of PIFU

Although PIFU is not a formal discharge, it may often feel like one. There is no next appointment in the diary. A clinician is not following up on your progress. For most people this certainly can feel like the service no longer needs to see you.

Patients placed on PIFU may tell themselves things like:

  • “They must think I am well enough, so maybe I am just expecting too much.”
  • “There are people in much worse situations than me. I do not want to take up an appointment they need more.”
  • “The service is probably very busy. I do not want to be a burden.”
  • “Maybe it is just something I have to live with.”

These thoughts are understandable. They reflect a genuine concern for others and a tendency to downplay personal need. But they can lead patients to tolerate pain, reduced function and a gradual worsening of their condition long after they should have sought reassessment.

Who is most at risk

The NIHR evaluation identified specific groups who are disproportionately likely to struggle with PIFU. Staff raised concerns about patients with limited health literacy, those without reliable digital access, people with complex conditions and those who already feel uncomfortable engaging with health services.

For these patients, a model that depends on confident self-advocacy is not a safety net. It is a gap.

The problem is not the patient

If you are in this situation, the problem is not your willingness to seek help. Knowing that something does not feel right and translating that into a confident request for help requires a level of self-advocacy that not everyone finds easy, particularly when the absence of a follow-up appointment implies that your care is, for now, complete.

What this means in practice

For conditions of the hand, wrist, elbow and shoulder, known rehabilitation timeframes can be up to two years. The consequences of delayed reassessment and action can be significant. Scar tissue can form. Joints can stiffen. Muscles can weaken. Nerve recovery can stall. Many of these changes are harder to reverse the longer they are left.

A patient who should have been seen three months ago is not in the same position as a patient who is seen promptly. The window for optimal rehabilitation is not unlimited.

What you can do

If you are on PIFU and something does not feel right, that is reason enough to seek reassessment. You do not need your condition to have dramatically worsened. You do not need to justify your concern against someone else’s situation. Your recovery matters.

If you are not confident re-engaging with the service, or if NHS waiting times mean you cannot be seen quickly enough, private specialist assessment is an option. A single consultation can establish where you are in your recovery, what is still possible and what the next steps should be.

Ms Razo sees many patients who have been on PIFU and have been managing alone, sometimes for months or years. If your recovery has stalled or something does not feel right, an independent specialist assessment can give you a clear picture of where you are and what is still achievable. No referral is needed.

Reference: Klepacz N, Agius S, Bamber J, et al. Investigating innovations in outpatient services: a mixed-methods rapid evaluation. National Institute for Health and Care Research (NIHR); September 2024. Available from: ncbi.nlm.nih.gov/books/NBK607633