Gemma Peters, chief executive of Blood Cancer UK, is worried. The coronavirus lockdown has had a drastic effect on cancer care. Data now emerging suggests that, within the past two months, two-week urgent referrals for cancer tests and diagnoses have fallen by an average of 76 per cent in some places. It’s a “horrendous” situation, says Peters.
Delays can be particularly deadly for certain cancer patients, she explains. For instance, people with blood cancer can find that it takes a relatively long time before they receive a diagnosis – often because symptoms of the disease are difficult to distinguish from other conditions. “We’re going to have a whole load of people with blood cancers being diagnosed later,” says Peters. That means worse outcomes for patients, more pressure on the healthcare system and the worrying possibility that those patients, who might be identified when their cancer has progressed to a more severe stage, will not be well enough to take part in clinical trials of drugs that could help them.
This situation is likely to be made even worse by another problem: reduced funding for cancer charities. Blood Cancer UK is currently forecasting that it will lose £6 million in funding this financial year thanks, in part, to the cancellation of fundraising events during the lockdown. “There’s going to be a huge drop in the number of trials that will be funded,” Peters says.
Blood cancer also happens to be the most common cancer in children and adolescents. There are signs that diagnoses of the disease in those age groups has fallen off a cliff, according to Peters. “That shouldn’t be happening at all,” she says.
The lockdown was, most experts agree, unavoidable – an emergency measure designed to slow the spread of the new coronavirus in the UK. Among the people it protects are cancer patients, many of whom are particularly vulnerable to Covid-19. “They’ve got no desire at all for the lockdown to be lifted,” says Peters.
And yet the lockdown has had problematic side effects. From cancer to arthritis to heart attacks, there are all sorts of conditions that require timely diagnosis and interventions. Missing or failing to treat them could lead to a staggering number of otherwise avoidable deaths.
NHS England has come up with a plan for how to get the healthcare system running as “normal” again, and managers have stressed to GPs that urgent outpatient appointments should go ahead. In terms of treatment, hospitals are setting up hubs designed to be free of Covid-19. Cancer patients can visit such facilities in order to have surgery, for example. However, Cancer Research UK has said that, to date, the provision of these hubs in Wales has been slow, whereas 21 centres have been established in England.
Problems don’t just lie in the availability of services. There’s also the fact that many people are simply afraid of visiting their doctor or a hospital at the moment because they are terrified of catching Covid-19. GPs are concerned that, given warnings over the capacity of the NHS, some patients will have decided to stay at home with symptoms that, in fact, could and should be dealt with sooner rather than later.
Other cancer bodies are also raising the alarm. “We are indeed concerned about the drop in numbers of patients who are being urgently referred into hospital,” said the UK Oncology Nursing Society (UKONS) in a statement. Late diagnoses could mean cancers that are more difficult to treat and patients who suffer from worse symptoms, the statement adds. The UKONS says that patients with weight loss, unexplained bleeding, new lumps or any other potential cancer symptoms should report them to their GP.
A group of researchers in the UK recently published a preprint paper detailing the drop-off in urgent cancer referrals, based on information from two London hospitals, one hospital in Leeds and all the Health and Social Care Trusts in Northern Ireland. The team also estimated the number of excess deaths in cancer patients that might arise during the pandemic.
Chemotherapy attendances were down 60 per cent on average and urgent referrals were down 76 per cent on average, the researchers found. There has been much discussion about the extent to which urgent referrals have fallen across the country. On May 1, the Health and Social Care Committee heard from Cally Palmer, the National Cancer Director, that the reduction in appointments was 62 per cent.
“We absolutely have evidence that the number of urgent referrals for early diagnosis [...] has plummeted,” says Harry Hemingway at UCL’s Institute of Health Informatics, one of the preprint’s co-authors. However, Hemingway argues that not enough data is available to give a full picture of what’s happening to cancer healthcare across the NHS. Information from the national cancer registry or real-time, UK-wide data on hospital admissions, for example, would help fill in the gaps, he says.
The study he and his colleagues made relied instead on records supplied by the aforementioned hospitals and health trusts. The fact that those institutions decided to share their data so quickly was a “remarkable achievement”, says Hemingway.
His team also used a model to estimate that there will be a total of 17,915 excess deaths in England among new and existing cancer patients after one year. That includes deaths caused by either cancer, Covid-19 or other health issues – there isn’t sufficient data to be more specific, says Hemingway. Plus, the model does not reveal the number of deaths that could be caused because of missed or late cancer diagnoses during the lockdown – again, Prof Hemingway says he and his team would require more data to model that. But the analysis remains an indication of how perilous the current situation is for cancer patients.
Other estimates paint an even starker picture. Karol Sikora is chief medical officer of Rutherford Cancer Centres, a network of cancer clinics in the UK. He says his “back-of-the-envelope” calculation suggested that 60,000 cancer patients could die if there is no change in the uptake of referrals for diagnosis and treatment for a total of six months. The figure is based on the fact that 180,000 treatable cancer patients are identified every year in the UK but a third of them could pass away if everyone’s treatment is delayed by six months. That would mean 60,000 deaths, says Sikora.
It should be noted that while chemotherapy and operations remain cancelled for many, some hospitals are now starting to offer such treatments again. Some have questioned whether the government could have begun relaxing the lockdown sooner in order to avoid such a catastrophe. On April 8, Sikora said on Twitter that he thought the UK had reached the peak of infections and that the country would be able to begin easing the lockdown by April 27. However, the numbers of Covid-19 cases reported each day remained flat for the following fortnight.
“It has been slower than I thought,” he now says. In a recent article published on ITV’s website, he said the government had been “right” to take the restrictive measures that it had.
The frontline of the cancer diagnostic system is GPs surgeries. It is there that patients may first raise their symptoms with a health professional who can then refer them on for scans or tests that can show whether they have cancer. And GPs surgeries are where the public’s current reluctance to engage with the healthcare system is being noticed.
Neil Bhatia is a GP in Hampshire. He says that many patients are continuing to stay in touch via an online system called eConsult. It allows patients to send in queries about their health – and even attach photos of visible symptoms. Bhatia and his colleagues spend their days working through submissions filed online in this way and responding to patients, for example, via telephone appointments. While there is still plenty of work to do, Dr Bhatia says he is aware that people’s willingness to contact their doctor has changed. “I do think patients are thinking twice,” he says. “They have the misconception that unless they’ve got coronavirus symptoms they shouldn’t bother the NHS at all.”
The idea that patients are not disclosing important symptoms is alarming many GPs. Prof Martin Marshall, chair of the Royal College of GPs says, “Our practices are open and we urge patients who are ill or have concerns about their health, particularly if they have serious concerns about potential cancer symptoms, to contact their GP practice.” GP referrals “save lives” he notes, adding, “We can’t stress enough how important it is that patients with any concerns about their health, not just potential cancer symptoms, seek the appropriate medical attention.”
Bhatia agrees, and points out that there is a wide range of diseases beyond cancer to think about. For instance, patients might think that their persistent cough is a coronavirus symptom and simply follow the official advice on how to manage Covid-19. However, a chronic cough could indicate something else entirely – an underlying lung problem, for instance. Peters also notes that some symptoms of blood cancer including fatigue, fever and breathing difficulties, could also be mistaken for Covid-19.
Then there are other signs and symptoms that patients might think they can put up with for a while but which really should be urgently addressed. “It could be something like rheumatoid arthritis,” says Bhatia. “The longer you leave the arthritis active, the more joint destruction happens. [...] They’re the sort of person you would want to refer to a specialist soon.”
Delaying treatment can have potentially disastrous consequences. Anna, not her real name, is convinced that her father’s heart attack could have been avoided if it hadn’t been for social distancing and the pressure on health services.
She says her father, a throat cancer survivor, had been experiencing discomfort in his chest for around two weeks before the heart attack occurred. Since the incident, he has commented that he considered mentioning the pain at his wife’s cardiology appointment – but that was cancelled due to Covid-19. Anna, who says that the lockdown was ultimately a necessary measure, adds that in normal circumstances her father might have mentioned his symptoms in passing to a family member. That could have raised their concern, ultimately leading to an appointment being arranged. But thanks to social isolation, he didn’t get the chance.
“I am absolutely sure that, had we not been in the situation we are in now, my dad would have [...] gone to his doctor,” she says. When the heart attack happened around two weeks ago, Anna says her mother called 999. Her father was rushed to hospital in an ambulance where he received surgery. He has since been in recovery. “They’ve told him he’s been very, very lucky,” says Anna.
The government says that it is OK to visit vulnerable and elderly relatives, though such visits should only occur when they are deemed “essential” – for example to provide care. This seems logical but it might also leave fewer opportunities for a person to mention symptoms they have been experiencing and, therefore, a greater chance for serious conditions, besides Covid-19, to go undiagnosed.
That is perhaps the main reason why this “other” public health crisis is unfolding alongside Covid-19 – broken connections between people. Whether it’s GPs seeing fewer patients with cancer symptoms, or families divided, a breakdown in communication is a threat to public health, says Bhatia.
“The intention was never to not communicate with each other – it was just not to communicate face to face,” he says.
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This article was originally published by WIRED UK
