Patients removed from reported waiting list

There are concerns that patients will be lost in the system following the implementation of new guidance for managing waiting lists by NHS England.

The guidance, which was published at the end of October, permits clinicians to remove patients from the NHS elective waiting list after they have declined two offers of treatment and place patients on ‘active monitoring.’ 

In response to a Freedom of Information Act (FOI) request by Optometry Today, NHS England confirmed that 323 patients were placed on active monitoring between October and the end of January.

Speaking to OT when the guidance was first published, a spokesperson for the Royal College of Surgeons highlighted that while the guidance seemed sensible at face value, how it is executed would be key.

“NHS trusts and clinicians will need to ensure that patients do not feel bullied into moving off the waiting list, and into active monitoring,” the spokesperson highlighted.

“NHS England will also need to ensure that trusts are not tempted to use the guidance to game waiting lists, making them appear shorter than they are in reality,” the spokesperson emphasised.

Concerns were also expressed about the practicalities of implementing the new guidance.

The Royal College of Surgeons stated: “It may be wholly appropriate that a patient is moved to active monitoring, if they agree with that approach. But, will NHS systems be able to cope with moving patients on and off waiting lists?”

At the end of January, only 27 out of 533 NHS providers had placed patients on active monitoring. Seven of the providers placing patients on active monitoring were NHS trusts, while the remaining 20 were independent hospitals.

The Royal College of Surgeons shared: “Used responsibly, these new guidelines could give us a more streamlined picture of patients waiting for treatment, and patients a more realistic idea of how long their waits might be. Used poorly, it could see patients lost in the system, or banished to waiting list purgatory.”

A hidden waiting list?

Waiting list consultant, Rob Findlay, of data and elective pathway management company Insource, highlighted the importance of a clinical decision being made when patients are placed on active monitoring.

“If clinicians are making clinical decisions that are in the best interests of the patient, then there is no problem,” he said.

However, he expressed concern that clinicians could come under pressure to remove patients from the waiting list, or that administrators rather than clinical staff could have responsibility for the decision.

In its response to Optometry Today’s FOI request, NHS England highlighted that patients were placed on active monitoring following a “clinical conversation that has determined it is clinically appropriate for a patient to choose to delay their treatment.”

Referral to treatment expert and Insource colleague, Karen Hyde, questioned the degree of patient choice that is present within the new guidance – for example, if a patient is repeatedly offered an appointment in a location that they cannot get to.

NHS trusts and clinicians will need to ensure that patients do not feel bullied into moving off the waiting list

“Ophthalmology contains quite a lot of elderly patients. They may not have transport or someone to take them to another area,” she shared.

A frequently asked questions document seen by OT did not provide specific parameters for what would be considered a reasonable location for an appointment.

“A reasonable offer will be determined by each region based on the geography of the region,” the document stated.

Hyde shared her concern that patients would be lost in a “hidden waiting list” as a result of the guidance.

“I always think about mums and aunties, grandads and best friends. These are patients – this should not be about making waiting lists look more palatable,” she said.

Lessons from Scotland

Findlay suggests that NHS England should look to Scotland for an example of the risks of creating exceptions to the reported waiting list.

In Scotland, there was a large increase in the use of social unavailability codes between 2008 and 2011.

Social unavailability codes can be used when a patient is unavailable for treatment and are not included in the patient’s overall waiting time.

An Audit Scotland report in 2013 found that the use of this code increased from 11% to 31% over the four-year period.

The report concluded that the focus on waiting time targets led to insufficient scrutiny of how these targets were being achieved.

The proportion of patients coded as socially unavailable was higher in specialties with high patient numbers and pressure on capacity such as ophthalmology and orthopaedics.

For example, in 2011, 40% of patients on the waiting list for ophthalmology outpatient treatment at Southern General Hospital in Scotland were coded as unavailable.

Audit Scotland also found limits on the choice that patients had when offered alternative appointments.

“We found little evidence to suggest that NHS boards are taking account of patients' individual circumstances, such as access to transport, mobility or additional support needs, before offering them treatment at a location outside the board area,” the report highlighted.

The AOP view

Dr Peter Hampson, AOP Clinical and professional director, shared that the guidance may appear to be a pragmatic solution on the surface, where patients agree to be moved on to active monitoring due to their individual circumstances.

“But the difficulty here is that once recategorised these patients may fall off the radar and as a result would not receive the care and treatment they require. We’re already seeing thousands of people experience delays to treatment due to the backlog in hospital eye care and there is a very real concern that this new approach allows even more patients to fall through the cracks. Given that ophthalmology patients are often elderly and the reasons they cannot attend may be practical and even financial it’s essential that trusts exercise prudence,” he said.

In March, the AOP launched its #SightWontWait campaign, calling on the Government to commit to a national eye health strategy to address the hospital backlog.

The AOP revealed that 628,502 people are waiting for ophthalmology appointments in England alone.

Template letters are available on the AOP’s website for optometrists to send to their local MP explaining why change is necessary.

More information about #SightWontWait, including patient stories, can be found online.