Patient Initiated Follow-Up – PIFU for short – is not a new concept but it has been given further impetus as the NHS takes steps to respond to the continuing pressures posed by the Covid-19 pandemic. The 2021/22 Operational Planning Guidance sees PIFU as “helping providers and systems manage waiting lists and to see patients most in need more quickly.” As such, it has significant potential for improving health and managing resources wisely.

For patients, the idea of follow-up when it is needed rather than routinely at regular intervals irrespective of need, is an attractive prospect. Many of us have experienced exacerbations of long term conditions or concerns about recent acute problems just after attending an out-patient appointment when the next opportunity for follow-up may be far away. Equally, many of us have had routine consultations that we do not feel we need, but we have attended them rather than fall out of the system. Clearly, flexibility and responsiveness to individual needs for follow-up could be a win-win for patents as well for clinical teams, but there are still many aspects that concern patients and clinicians alike.

First, from a patient point of view, at a practical level, PIFU only works if it is possible to make contact with the hospital or clinic easily and in a timely manner. It won’t work if we have to make numerous phone calls to a number that is always engaged, as is often the case now when we wish to make or change appointments. It won’t work if we make contact only to find that the next possible appointment is weeks or months ahead. Patients will only feel safe with PIFU (and indeed, will only be safe) if they can get prompt advice and attention when they feel they need it.

Second, patients need accessible and ongoing information on when they should initiate follow-up. Patients may seek help because they are in pain or their mobility declines. But they also need clear and accessible information on other signs or symptoms that ought to prompt them to ask for follow-up.

Third, the worry is that some individuals or groups of patients may be less likely than others to seek the help they need, perhaps fearing that they will be seen as a nuisance or not taken seriously. Unfortunately, some of the most vulnerable patients may be least willing or able to initiate follow-up. Some people, such as those with learning disabilities or communication challenges of various kinds, may find it difficult to ask for what they need.

Also, it is reasonable for patients and the public to be concerned that PIFU is starting out with the best of intentions, but could become a soft target for cuts. This could  result in unacceptable waits when patients wish to initiate a follow up, particularly when the system is under extreme pressure.

None of these concerns should be taken as opposition to PIFU. It has great potential to put patients at the centre of decisions about their healthcare, just as they should be. But implementation is key. Clinicians, patients and managers must work together on how to make PIFU work well in those specialties for which it is appropriate. We need ongoing scrutiny to ensure that it actually works as intended and we must be assured that those patients who are at risk of not getting the follow-up that they need are identified. And, of course, we’ll need to see evidence that PIFU is – as we hope – a gateway to the right follow-up at the right time and not a trapdoor to no follow-up at all.

Ros Levenson
Chair of the Academy Patient Lay Committee

13 December 2021