Recovery Watch: ‘Stay away patients’ are causing alarm

This week Recovery Watch analyses the alarming number of patients deferring procedures because of covid, as it emerges around a quarter of electives could be in the growing new “P5” cohort, and how system leaders hope to track them. 

NHS England’s guidance this month on a “clinical validation of surgical waiting list” prompted some concerns patients could be coerced into waiting longer for appointments, and suspicions they could even be knocked off the list completely.

The document insists otherwise, on the latter point at least. On page 1 in bold font, it states: “The project is about making the best mutually agreed decisions with patients and is not an exercise to reduce numbers on waiting lists.”

HSJ will reserve judgement on that until after we have seen how the guidance is transcribed into practice. It was, however, drawn up with the support of the Academy of Medical Royal Colleges and relevant royal college support.

Scared patients are the biggest problem

Any exercise of this ilk involves difficult moral and clinical decisions about who gets seen first and whose needs are greater. But with the waiting list surging uncontrollably and widespread elective cancellations expected from now through winter, such a move is not only sensible, but also imperative.

Patients will doubtless be upset and angry if their operations are delayed, and understandably so. So, it was not a surprise that the Daily Telegraph (£) opted to focus on the legitimate concern that patients could potentially be bumped to the back of the queue and the guidance on how staff should deal with patients “anger and distress”.

But in recent weeks the bigger problem for trusts has actually been persuading patients to come into hospital in the first place, rather than trying to delay their visit. A potentially huge number of patients of widely varying clinical risk want to defer their appointments because of covid, a trend which began during the first wave.

Some are in at-risk groups and afraid of catching covid in hospital. Others are indirectly impacted by the virus, such as those in precarious employment and scared to take time off work to have and recover from an operation.

How big is the stay away patient problem? 

An Ipsos Mori poll of more than 2,000 patients, shared exclusively with HSJ this month, revealed around 42 per cent of those attending for new or recently changed conditions had their care cancelled or delayed during March and July.

However, of patients in that group, 23 per cent chose to cancel their care themselves. This figure rose to 31 per cent within the group of people requiring care for an ongoing problem.

The trend is expected to continue over winter – indeed, Royal College of Surgeons president Neil Mortensen told HSJ: “The biggest issue [in relation to the clinical revalidation exercise] is not going to be where people are on the list, but who wants the operation in the first place…

“There is a suggestion that could be 10-15 per cent, and some people have even suggested as much as 20 per cent [could look to defer their appointments because of covid].”

Patients deferring appointments may relieve a little pressure in the short-term – and for some of them will make sense. But it will also create significant potential patient harm in the longer run.

Waiting list expert Rob Findlay told HSJ: “My main concern is that patients should only be removed or suspended from waiting lists if that is their free and genuine choice. There should be no attempt to nudge or coerce them into removal or suspension, nor any incentives from the centre to attempt this. In fairness the guidance is taking the right line here.”

Mr Findlay said he agreed with Professor Mortensen that “changing priorities will not make much difference to the bulk of waiting times. This is an important point”.

“I do have some concerns that urgent patients, who would previously have been booked within two weeks or four weeks in normal times, might under the new urgency categories be booked within one month or three months instead, and this may increase the clinical risk to them without significantly reducing waiting times and risks for routine patients,” he added.

Barry Mulholland, a partner at MBI Healthcare Technologies, is working with a number of trusts on their waiting lists issues. Getting patients to come in was proving a “thankless task” for staff, he said.

He said: “Trusts, certainly the ones I’m working with, are genuinely pulling out all the stops to get patients in. This is mainly because most of them think that come January all bets are off, and they’ve got between now and then to see as many patients as they can.

“They’re trying to book in as many as possible, but it’s an absolutely thankless task. About one of three of them are adamant they want to delay and the other two probably come in but need a bit of persuasion.”

How will covid-related deferrals be tracked?

A new category, called P5, is set out in the new NHSE guidance. It will comprise patients deferring care specifically because of covid. Those deferring for non-covid reasons go into a new P6 catagory. 

Patients have been able to remain on the waiting list for treatment, even if this extends their RTT pathway beyond 52 weeks since 2015. But until now there has been no systematic way of capturing a patient has chosen to defer treatment because of their concerns about covid-19 and for the NHS to profile its impact on the waiting list. The guidance says the P5 category will do this.

It says: “Patients who fit the P5 category will remain on the appropriate active waiting list(s) and therefore remain visible… waiting times will not be ‘paused’ and clocks will continue to tick through the period that the patient chooses not to attend.

“[P5 patients] must not be discharged back to their GP, unless this is in their clinical interest and has been agreed by them following a conversation with their clinician. Patients will be given a review date [within a maximum timescale of six months] to make sure their condition or preference has not changed.”

With so many other problems to worry about, keeping tabs on this group will present another challenge for trusts. But if they lose grip on this cohort, it could create huge problems similar to the growing iceberg of harm created by delayed outpatient follow-up appointments.