What the cancer diagnosis shortfall means for patients and practitioners

The last twelve months have been a very different time for all of us, both personally and professionally. Work in general practice has seen significant shifts and challenges; from adapting practically to new ways of working and managing the direct clinical challenges of COVID-19, to delivering a vaccine programme on a scale we have never attempted before.

As a GP who focuses much of my time on cancer, I'm particularly concerned about the significant reduction in people being diagnosed with cancer since the pandemic started. When compared to previous years, this reduction demonstrates that many people with ‘undiagnosed cancers’ have not yet presented to their GP. This will have implications for their future care.

At the height of the pandemic in 2020, there were an estimated 50,000 people living with an undiagnosed cancer. We don’t know how many of these people may still not have presented to a health care practitioner, perhaps due to worrying about the risk of COVID-19 or not wanting to burden a struggling health system.

We also don't know how many patients had contact with primary or emergency care. With changes to ways of working and pressure on the health system, these cases haven’t yet been investigated appropriately.

What it means for patient care

There are many reasons for the shortfall, which need attention, but what I am reflecting on are the challenges still to come for this cohort of patients. They will present over the next few months or years, potentially with cancer at a later stage than we typically see. And some will present with extensive and incurable disease.

I am already hearing from colleagues working in the acute sector who are seeing more people presenting with metastatic disease than before the pandemic. These colleagues are significantly affected by the issues this poses for them as healthcare practitioners, and for the patients who have to accept very difficult news.

I can only presume those of us in primary care must also be prepared for patients presenting at a much later stage and the diagnostic difficulties this brings. If this is the case, we will need to support patients and their loved ones with the complex psychological challenges they are likely to face. And, potentially, be prepared to see patients who did have contact with the health system, but who received a late diagnosis or were managed differently due to the pandemic and the barriers they faced.

What we can do in primary care

So, what can we do to prepare? We must ensure our current ways of working (which may look significantly different to how they looked before the pandemic) are not creating barriers for people who want to discuss health concerns and undergo a review. We need to be explicit in our communications with patients, to let them know primary care is safe and open for business and to contact us if they have any worries.

We need to be aware that a patient’s first contact with the practice can affect their impression of how effectively we are working. It's important to let our patients know they can be investigated just as safely and quickly as before the pandemic, even if pathways may look a little different. And finally, we need to be clear that despite delivering the vaccine programme, we are still available for our patients.

While primary care physicians rarely see first presentation of late-stage disease, we may be faced with patients who are presenting later. So, we need to be aware of what this looks like and consider the most appropriate pathways to get patients into the system, investigated and managed as quickly and sensitively as possible. These may be pathways we are familiar with or pathways we seldom use (such as acute oncology or CUP/MUO services), but ensuring we are aware of all options may greatly improve patient experiences.

We also need to be aware of the psychological burden a late diagnosis can put on a person and their loved ones. I am not a psychologist, but it worries me that delays to diagnosis were compounded by the pandemic and that people may have made different decisions under normal circumstances.

The legacy of the pandemic

While things seem to be on the road to normality, the COVID-19 pandemic has brought about some changes that will be here to stay, in some form or another. In primary care (and potentially secondary care), we are likely to continue with a higher proportion of virtual consultations. As this becomes business as usual, we need to ensure we adapt appropriately. This includes considering any skills we need to develop, which new pitfalls to look out for, and which ways of communicating may be necessary to prevent driving new inequity.

So, it’s been a difficult year for all of us and unfortunately, the difficulties are not over yet. But let’s build on the resilience we have all shown as health care workers and continue to provide the best care we can for our patients. And let's remember to care for our well-being, too.

Want to improve your virtual consultations? See our 10 top tips for virtual consultations in primary care.