First published in the Health Service Journal

NHS England have been communicating new ‘Interim Operational Guidance’ to trusts. If patients decline two offers of treatment, at times and locations chosen by the NHS, it allows trusts to remove them from the reported waiting list and onto active monitoring.

After circulating under the radar for a while, this has now been published as official guidance. NHS England have expressed some remorse about how the guidance was produced, but said it would not be changing. I will argue here that it should: the guidance may be unlawful, undermines National Statistics, puts managers at risk of prosecution, erodes public trust in the NHS, and should be withdrawn.

Unlawful

Let’s start with unlawful. The guidance helpfully starts by referencing the Statutory Instrument under which it operates, and here we immediately run into difficulties because (in regulation 50) it refers to “The Referral to Treatment Consultant-led Waiting Times Rules Suite dated October 2015” not the new version which is dated October 2022. [Update: this was resolved on 1st January 2024 when a new regulation 43B(8) came into force.] So the provisions of the 2015 version may still apply, including the following paragraph which the new guidance contradicts:

“Active monitoring may apply at any point in the patient’s pathway, but only exceptionally after a decision to treat has been made. If such a decision has been made but subsequently it becomes apparent that there is a clinical reason to delay treatment/ admission then a waiting time clock would usually continue.”

Even if the new guidance were in force, it would conflict with regulation 48(4) concerning patient choice, which requires the NHS to offer over-18-week waiters a choice of provider where possible. (The exception for active monitoring at regulation 49(8) only applies within the first 18 weeks waited.) [Update: the new regulations from 2024 do not change these regulations 48 and 49; at the same time, new Choice guidance was also issued on 19 December 2023 which recognises the new guidance]

Even if none of those issues applied, managers will need to take care to stay within the law when implementing this new guidance. The regulation covering ‘active monitoring’ (46(5)(b)) is based on ‘clinical decision’. So if any manager is asked to remove a patient from a waiting list onto active monitoring without a clinical decision, they would be wise to seek a written statement of the legal basis for doing so, because otherwise they or their senior manager could face severe personal consequences, as we will see below.

National Statistics

Referral-to-treatment (RTT) waiting times data are designated National Statistics, the importance of which is explained towards the end of every statistical press notice. The new guidance effectively requires the NHS to maintain two different versions of the RTT waiting list: a real one for managing patients, and an altered one for reporting a more flattering version of RTT waiting times to the public. I expect NHS England’s statisticians may take a dim view of this, and take steps to resolve the issue within their professional code.

The two versions arise when patients have been removed from the waiting list and placed on active monitoring, but then want to rejoin the waiting list. The guidance is very clear about requiring two different versions of the truth, stating:

“If the patient wishes to go ahead with treatment, the provider should offer a new ‘to come in’ (TCI) date acting as if the patient is on the waiting list at the point which they previously left – that is, they should not be returned to the beginning of the waiting list but they will have a new clock start.”

In case that isn’t clear enough, the FAQs say:

“The patient should be recorded from an RTT perspective as at week 0; but managed as if they have re-entered the waiting list at the point they left.”

The administrative confusion this causes is evident in several of the FAQs, particularly the one discussing the practicalities of managing patients on the hospital’s Electronic Patient Record (EPR) or Patient Administration System (PAS). It says:

“How are you advising Trusts to manage allocating a TCI in line with the RTT wait at the point of clock stop…for example, if the patient was at 30 weeks and they have been on a stopped clock for 12 weeks, how would Trusts/bookers know the previous wait? Is the expectation that Trusts need to develop some form of manual tracking system to manage this? Record it in the medical record somewhere depending on the functionality of the EPR system?

“Yes, this will be subject to implementation at a local level depending on EPR/PAS functionality.”

Even though Version 2 of the FAQs already contains some 64 questions and answers, there is a need for plenty more. What happens if a patient has declined one TCI, and we are now more than six weeks after that date? Can the second TCI be before the first? How far can patients be required to travel? How long can patients be held in active monitoring? As the NHS grapples with this complex new guidance, all the permutations will quickly surface and many are not yet addressed in the FAQs.

Criminal offence

It can sometimes feel as though these issues are negotiating points within the NHS family, but managers should remember that the law applies, and the people who are issuing verbal instructions that fall outside the law today may be nowhere to be seen when a prosecution is underway.

If any of the issues identified above lead NHS managers to supply RTT data that is false or misleading, they put themselves or their senior managers at risk of criminal conviction under the Care Act 2014. The penalties are an unlimited fine, up to two years in prison, or both.

And rightly so. The RTT standards, statistics, and associated performance management exist to protect patients from excessive waiting times. If instead they are misused to conceal excessive waiting times then that protection will be lost and patients will come to harm.

Public trust

Which brings us finally to public trust. There is a risk that the new guidance will be used as a device for removing long-waiters from the published waiting list data, to make it look as though 104 week and 78 week waits have been eliminated when in reality they have not.

And this is, very likely, only the beginning. The Scottish NHS has also set targets to eliminate long waiters, and a decade ago the exceptions and loopholes had expanded to the point where more than 30 per cent of waiting list patients were being classified as ‘unavailable’. This is a glimpse of the future for England too, if it continues on the current path.

The new guidance should be withdrawn. The Department of Health and Social Care should reconsider its approach to reducing long waiting times, to minimise the harm to patients, and protect the relationship between the NHS and the public it serves.