NHS secondary care waiting lists – the impact on patients and on general practice

Nada Khan is an Exeter-based NIHR Academic Clinical Fellow in general practice and GPST4/registrar, and an Associate Editor at the BJGP. She is on Twitter: @nadafkhan

“Nothing happens, nobody comes, nobody goes, it’s awful!”

Estragon in Samuel Beckett’s ‘Waiting for Godot’

Waiting is an inevitable part of any healthcare system, but increasingly long waits in the NHS are starting to feel a little but like waiting for Godot.  NHS waiting lists for surgery and other hospital procedures have reached ‘record highs’ alongside increasing waits in A&E departments and for emergency services.  The reasons behind longer waits are complex and signify a health service struggling with hospital capacity and lack of inpatient beds, inadequate social and community care, and staff shortages and illness during the Covid pandemic.  Increasing waiting times for specialist review, hospital procedures and operations has a substantial impact on patients who carry the physical and psychological burden of waiting.

What are the impacts of waiting times on physical and mental health? 

There are several potential scenarios in which health can be affected by waiting for procedures or surgery.  In the best case scenarios, a patient’s health improves or remains stable, either spontaneously or due to self-care, while waiting for treatment.  In the worst case scenarios, the patient’s health deteriorates, and even worse, this deterioration might not be reversible after a certain ‘critical’ waiting time.¹  Cancer, for instance, is an example of how a longer waiting time can lead to disease progression past a critical tipping point and results in an untreatable tumour or tumour spread.  Concern about cancer and increasing waiting times during Covid has recently been examined in BJGP Open; some GPs feel that they are ‘firefighting’ when patients referred during the Covid pandemic come back to see them with worsening symptoms whilst waiting to be seen.²

In terms of the psychological impact, patients experience increasing anxiety and depression, and poorer quality of life as waiting times increase.³  The EQ-5D is a quality of life measure which allows for negative utility values, which has led some of our orthopaedic colleagues to report an alarmingly named state of ‘worse than death’ amongst patients who score less than zero on the score,  A study of patients waiting for hip and knee operations showed that increasing waiting times were correlated with worsening quality of life, and that the longer wait times led to a doubling of patients ‘worse than death’ during the Covid pandemic.⁴ Increased waiting times matter to patients, and it is no surprise that it is associated with patient dissatisfaction, poor clinical outcomes, inequality and patient anxiety.⁵

How can clinicians, and us in primary care, support patients who are waiting longer? 

In terms of managing physical symptoms and deterioration, how are GPs meant to deal with patients who fall into the worst case scenarios and are experiencing potentially irreversible deteriorations in the their health due to longer waiting times?  Some surgical teams are using prioritisation strategies to try and manage the backlog of patients waiting for routine operations.  In primary care our options are to escalate care and reroute referrals from routine to urgent pathways where clinically indicated, or try to manage disease progression that might be out of our generalist remit.

It is worth acknowledging the psychological burden of increased waiting times on our patients and what it means to them.  A recent scoping review of the literature around how to support patients who are waiting for procedures considered some of the strategies to support their mental health.  Group or individual therapy and educational strategies didn’t really help; what helped was ‘acknowledgement of the burden of waiting, peer support and periodic communication to update wait-list status’.³  This seems do-able in general practice; just a simple ‘it must be difficult waiting, how are you doing?’ might help patients unload their worries and frustrations about a service that is straining at the seams.

The long-term nature of increased waiting times

The NHS is facing a backlog that will take years to clear.  Average waiting times are increasing for most hospital procedures and operations, and GPs are likely to be the main point of contact for patients who are experiencing disease progression and worsening quality of life and anxiety while awaiting specialist assessment and management.  Thinking about how to manage both the physical and psychological impacts of waiting is worth careful consideration, and compassion, to help minimise the heavy burden our patients carry.

References

1. Koopmanschap MA, Brouwer WB, Hakkaart-van Roijen L, van Exel NJ. Influence of waiting time on cost-effectiveness. Soc Sci Med. 2005;60(11):2501-4.
2. Archer S, Calanzani N, Honey S, Johnson M, Neal R, Scott SE, et al. Impact of the COVID-19 pandemic on cancer assessment in primary care: a qualitative study of GP views. BJGP Open. 2021;5(4).
3. Gagliardi AR, Yip CYY, Irish J, Wright FC, Rubin B, Ross H, et al. The psychological burden of waiting for procedures and patient-centred strategies that could support the mental health of wait-listed patients and caregivers during the COVID-19 pandemic: A scoping review. Health Expect. 2021;24(3):978-90.
4. Clement ND, Scott CEH, Murray JRD, Howie CR, Deehan DJ, Collaboration IM-R. The number of patients “worse than death” while waiting for a hip or knee arthroplasty has nearly doubled during the COVID-19 pandemic. Bone Joint J. 2021;103-B(4):672-80.
5. McIntyre D, Chow CK. Waiting Time as an Indicator for Health Services Under Strain: A Narrative Review. Inquiry. 2020;57:46958020910305.

Featured image by Ben White on Unsplash