There is rarely a good time or place to explain to a patient that they have an untreatable cancer. Three a.m. in a side room of a busy emergency department is certainly not it. But for this patient, whose life would be radically changed, and eventually cut short, by her diagnosis, the misery was compounded by a further question: ‘If I’d had it checked out sooner, could they have treated it?’
Sarah (not her real name) had put off seeking help during the early days of the pandemic, recognising the severe pressure the health system was under at the time. She thought she was doing her bit to ‘protect the NHS’. Yet looking back, she knew something was deeply wrong. Over ten months she had lost several stone in weight and become progressively more exhausted – ominous symptoms which would set alarm bells ringing for any clinician. By the time I saw her as an emergency admission, her cancer – picked up on CT scan – had spread to her liver and was no longer curable.
As services closed during the pandemic, it was screening programmes and GP referrals which bore the brunt
For cancer patients like Sarah, diagnosed at an advanced stage, many will look back for earlier signs and wonder if they might have caught it sooner. When assessing how advanced a cancer is, one of the most important measures is its stage. This is usually described by a number from one to four. Stage one means localised disease. Stage four means distant spread – metastatic disease – has occurred. As the stage increases, the likelihood of successful treatment (and survival) diminishes. For people with stage 1 bowel cancer, 90 per cent will survive for five years or more after diagnosis. For people with stage 4 bowel cancer, this drops to just 10 per cent. The aim of a cancer detection programme is to make the diagnosis at the earliest possible stage to improve outcomes.
In March 2020, as the spread of Covid-19 and lockdowns began to unravel much of the UK’s health service, providers raced to stabilise the situation and build capacity. The overwhelming fear was that Covid cases would outstrip the UK’s critical care bed capacity – the highest level of hospital care reserved for the sickest patients. Anything which could be paused was put on hold. Only the most urgent services continued uninterrupted. Efforts were to dissuade the public from using them unless absolutely necessary.
Cancer detection efforts were one of the major early casualties of pandemic policy decisions. There are three main ways in which cancer is diagnosed in the NHS: through screening programmes, GP referrals, and emergency admissions. Screening programmes, such as Fit testing for bowel cancer and mammography for breast cancer, aim to detect early disease in asymptomatic patients who are deemed to be at higher risk. GP referrals for suspected cancer are made under the ‘two-week wait’ system, in which a patient with suspicious symptoms is referred to a specialist, to be seen within a fortnight. And emergency presentations typically occur in cases of advanced disease, where severely unwell patients are diagnosed in A&E. This last group is associated with the worst outcomes.
To catch cancer early, diagnoses via screening and two-week wait referrals should be maximised. Patients identified via these pathways generally have earlier stage disease compared to emergency admissions. Yet as services closed during the pandemic, it was screening programmes and GP referrals which bore the brunt. In the UK there are currently three screening programmes, aimed at identifying bowel, breast and cervical cancer. Each saw a significant decline.
Uptake of bowel cancer screening, achieving a pre-pandemic high of 68 pre cent population coverage in Q2 2019/20, but fell to 55 per cent by Q4. Over the same period, the proportion of women attending breast cancer screening fell from 67 per cent to 55 per cent. It is harder to assess the impact on cervical cancer screening because of a different approach to reporting statistics, but the most recent figure for women who had been adequately screened in the last five-and-a-half years is at an all-time-low of 75 per cent.
At the same time as screening programmes were falling into disuse, access to GP services was becoming more difficult. Within a single month of March 2020, the proportion of face-to-face appointments fell from 80 per cent of all appointments to less than half. Undoubtedly this blunted the ability of GPs to accurately assess patients. The number of referrals under the two-week wait system fell from 190,000 in February to just 80,000 in April, and it would be a year before referrals were back on their pre-pandemic trajectory.
The overall picture is of a system which was quickly abandoned to build capacity for the Covid-19 pandemic. The early modelling which influenced pandemic decision making gave little consideration to the long-term public health impact of these measures.
What will the consequences be? Cancer develops gradually, and its impact plays out over months and years. But we can already see some of the effects. There were 26,048 new cancer diagnoses in March 2020, against a monthly pre-pandemic average of around 25,300. By May this had fallen to 15,723 – a decline of 40 per cent. The diagnosis rate would not return to the pre-pandemic average for a whole year, by which time (according to the pre-pandemic baseline) there were 40,000 fewer cancer diagnoses than we might otherwise have expected. It seems many cancers have been diagnosed late or not at all.
These findings are supported by a growing body of research which suggests we will see worse impacts for patients. An article from the Lancet in 2021 noted ‘a sustained reduction in the number of people referred, diagnosed, and treated for colorectal cancer during the Covid-19 pandemic, which are likely to have a significant impact on disease prognosis.’ Research in the British Journal of Obstetrics and Gynaecology estimates there will be nearly 1,000 extra cases of cervical cancer in England alone and a further paper found these cancers were presenting at more advanced and aggressive stages. Similar trends have been noted for breast cancer.
A review of 17 articles on the impact of the pandemic on cancer screening programmes concluded:
‘Cancer screening programs have been clearly interrupted since the onset of the Covid-19 disease. The anticipated outcomes include delayed diagnosis and marked increases in the numbers of avoidable cancer deaths. Urgent policy interventions are needed to handle the backlog of routine diagnostic services and minimize the harmful effects of the Covid-19 pandemic on cancer patients.’
This is not a phenomenon unique to the UK. Similar findings – a decline in diagnoses followed by an increase in advanced disease – have been identified in the US, Japan, Italy, Romania, Germany, and the Nordic nations. But the cost to the NHS will be vast. One paper estimates the impact in England will be almost 4,000 avoidable deaths and a cost of over £100 million, figures which the authors note are ‘very conservative.’
There were no easy options during the early days of the pandemic. The NHS was caught in zugzwang – needing to act but without any good moves. But patients like Sarah and their relatives will have serious questions, and they deserve answers. And their voices will only grow louder as the full impact of our response to the pandemic becomes apparent.
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