Transparent processes with a human touch: the essentials of good waiting list management

With over 4.7 million people in England waiting for planned surgery, questions of how to manage and prioritise NHS waiting lists have shot up the agenda for politicians, clinicians, managers, patients and the public alike. 

The effects of the Covid-19 pandemic on a system already struggling with a depleted workforce, underfunded social care, outdated estates, and insufficient ‘slack’ have undone much of the progress made on waiting lists since the issues of priority setting and rationing dominated health policy in the late 1990s. Indeed, Rudolf Klein’s 1998 comments about rationing are again relevant in the current context, even if the primary intention at present is to prioritise patients rather than ration care:

“The challenge everywhere is about how to organise and orchestrate what, for the foreseeable future, will be a continuing dialogue between politicians, professionals, and the public about the principles that should be invoked in making decisions about rationing and about how best to reconcile conflicting values and competing claims.”

Managing the waiting lists is in progress, supported by national guidance. But a different approach is needed from the last 20 years, where priority has been driven by waiting time targets, such that, to avoid breaching those targets, someone awaiting cataract surgery on their second eye might be prioritised over someone whose first eye has not been treated. 

The Royal College of Surgeons and various surgical speciality associations have developed clinical guidelines to guide prioritisation, along with the possibility of adjusting the priority level in response to factors such as “risk to function” and “psychological distress”. The accompanying blog by Rachel Hutchings and Dr Polly Mitchell highlights some of the ethical challenges involved, while this blog considers how to make processes for prioritisation acceptable to both patients and service providers. 

Challenges for patients and service providers

Seen through patients’ eyes, the challenge of reinstating hospital appointments that have been delayed or cancelled due to Covid is significant. The National Voices report, Patient Noun Adjective, analyses patients’ experiences of waiting during the pandemic, and it describes various detrimental effects. They include a deterioration in mental health, worsening physical symptoms, anxiety due to a lack of control over the uncertainties of treatment delays, and fears about issues such as employment and loss of income.

The report highlights, among other things, the importance of providing patient-centred information and communication, supporting people to self-manage symptoms while waiting (including virtual support), and providing access to regular review and specialist advice.

NHS England’s guidance on communicating with patients has clearly been shaped by these findings – creating a significant development and resource challenge for hospitals alongside their clinical arrangements for tackling waiting lists. 

If poorly implemented, the fears and frustrations experienced by patients and carers will spill over into general practice. GPs are already trying to combine routine care for current acute illness with managing long Covid, addressing the backlog of physical and psychological symptoms delayed by the pandemic, while also delivering Covid vaccinations.

The way forward

So how can this huge exercise in waiting list management best respond to the emotional and practical needs of patients and carers, while also avoiding ricocheting patients between overstretched hospitals and GPs?

First, we must build on the array of digital tools that are emerging to support remote review of symptoms and overall quality of life. One of the most sophisticated examples of this is the digital patient-reporting system used to monitor cancer patients in America, where patient-reported symptom scores are analysed to identify those who need to be contacted by the service. This is relatively uncharted territory in the NHS, although prototypes of triage technologies exist. It is an area ripe for development as part of the shift to digital health care.

Second, given well-recognised variations in the thresholds for referrals to specialists, GPs have an important role in managing the rate of new referrals. For example, Bromley CCG’s referral optimisation scheme requires GPs to add essential information and diagnostic test results before a referral can be submitted. This increases the appropriateness of referrals, and ensures that specialists have key diagnostic information available when they see a patient.

Third, GPs could play a role in reducing waiting lists. Alongside managing symptoms while patients wait for treatment, they can also support patients who are perhaps equivocal about proceeding with their intervention to look for alternatives to hospital treatment. This might include lifestyle changes such as weight loss and exercises to reduce hip and knee pain, or referral for home aids that enable people to live with their condition. This significant workload will pose huge challenges for practices that were already stretched before the pandemic, which highlights the importance of effective hospital systems that do not drive frustrated patients to their GP for administrative help, or expect GPs to follow up on clinical work initiated by hospital specialists.  

Fourth, ensure the recommendations in Patient Noun Adjective – captured in NHS England guidance – are implemented so that patients and carers can check on appointment dates, obtain self-management advice and report changes in symptoms without frustration or delay. The guidance on how to do this is already in place. Resources and, if necessary, additional funding must follow, along with agreed performance standards and transparency about how well they are working.

Fifth, learn from experience during the peak of the pandemic about the role that third-sector organisations can play in collaboration with NHS services (exemplified here). Many patient organisations have excellent self-management guides and expertise by experience of living with long-term conditions. With necessary investment, these organisations could become an important source of support and advice to those on the waiting lists.

While some patients’ needs are obviously more urgent than others, there will be a wide grey zone in the 4.7 million waiting list about the level of priority to attribute to each individual. The suggestions above make a start in dealing with this. However, with the possibility that some people may wait years for treatment, we need a wider public discussion about the factors that should shape priority setting, as set out in the other blog.

Charlotte Augst, the Chief Executive of National Voices, wrote in January that the promise of universal health care from the NHS has been broken. As we emerge from the pandemic, it is certainly being tested. The question is whether a careful blend of initiatives focused both on improving patients’ experience of waiting and on the efficient use of scarce health care resources will be enough to keep people believing that the NHS can still meet their needs.

*Please don’t forget to read the accompanying blog by Rachel Hutchings and Dr Polly Mitchell on the ethical challenges of managing the waiting list.