We’re in unchartered waters for delivering cancer care in this pandemic era of COVID-19.

At Cancer Research UK we’re working hard to support people affected by cancer at this unprecedented time. We’ve teamed up with charity partners to create advice, we’re listening to patients, carers and supporters to understand their concerns and we’re providing information and a nurse helpline for those wanting to chat things through.

And what we’re hearing is that many of you are understandably anxious and confused.

It’s undoubtedly a grave time for the NHS across the UK. We’re trying to build a full picture of the challenges to help identify and share solutions for getting cancer services back on track – and quickly.

It’s a variable and rapidly changing landscape, much of it bleak, but peppered with shining examples of innovation, creativity and dogged determination.

In our discussions with clinicians, patients, health leaders and experts across the UK, some key themes have repeatedly emerged for cancer services – from screening and diagnosis to treatment and care.

And while it’s vital to support the NHS through one of the most challenging times in its history, we also need to be talking about COVID-19’s impact on cancer services to ensure as few lives as possible are lost to cancer during the pandemic.

Screening services are being put on hold

Screening services have been formally ‘paused’ in Scotland, Wales and Northern Ireland and are  effectively paused in England as invitations are not currently being sent out from screening hubs.

Screening for breast, bowel and cervical cancer can detect the disease before any symptoms show, in the early stages when treatment is more effective. But with around 200,000 people per week no longer being screened for bowel, breast and cervical cancer across the UK, there will be a significant number of early cancers left undetected before these programmes can be reintroduced.

The NHS must develop plans for how to ramp up screening services as quickly as possible once practical. And it’s vital these plans should include how to re-introduce the necessary diagnostic test, for example colonoscopy for bowel screening, without overloading the service.

Cancer diagnosis has been heavily impacted – from GP appointments to tests

The first thing that’s become clear is that people aren’t coming forward with signs or symptoms that could be cancer. It’s not particularly surprising, many of us are giving health services a wide berth at this time.

But cancer doesn’t stop just because we’re in a coronavirus pandemic, and early diagnosis is as important as it’s ever been.

GPs are still virtually open for business even if the practices are not seeing so many people in person and they want to hear from you if you’re worried about something not being right.

The fact that fewer people are going to their GP with symptoms is impacting the whole diagnostic pathway. There’s been a significant drop in the number of ‘urgent referrals’ for cancer, often reported as ‘two-week wait’ figures. Overall, the number of urgent referrals has dropped to around 25% of usual levels in England.

This is largely because fewer people are going to their GP, but some GPs are also reluctant to risk sending their patients to the local hospital for fear of COVID-19 infection. But what it means is that for every week that this goes on, over 2,300 cancer cases are likely to be going undiagnosed across the UK – and these will be stacking up over time.

There are no easy decisions here. We’ve heard great examples of GP practices using ‘triage tests’ to help decide if people with symptoms should be referred for further tests or not.

GPs are conducting virtual appointments in a way that didn’t seem possible pre-COVID and the use of certain tests – such as FIT – in primary care to help GPs decide who’s at highest or lowest risk of bowel cancer is being accelerated.

What’s clear is that, for the growing group of people who might have cancer that aren’t being referred for further tests at this time, it’s crucial that there is a ‘safety net’ in place. To help with this, our teams have developed guidance to support GPs.

And finally, many diagnostic tests aren’t happening for fear of spreading the virus to patients and staff.

This appears to be especially impacting the diagnosis and care of lung cancers – the most common cause of cancer death – as well as cancers of the gastrointestinal tract and any that require investigation via tests such as endoscopy, bronchoscopies, guided biopsies and CT.

We’ll be working with the NHS to try to minimise the impact of this and help get these services moving again.

Cancer treatment has been severely disrupted

Despite national guidelines stating that urgent and essential cancer treatments must continue, unfortunately this is not the case in some hospitals across the UK. Surgery has been worst hit, and clinicians are needing to have very difficult conversations with patients to explain risks vs benefits.

It’s a mixed picture across the UK, with many hospitals and centres working innovatively to ensure as many people with cancer as possible are safely treated.

But we’ve been hearing that patients requiring major surgery aren’t able to have it as either there are no recovery beds with ventilation, no ICU beds if surgery were to go wrong or because the surgery is just too risky for patients and staff. Unfortunately, these issues are heavily affecting those who might benefit from surgery the most, as many ‘curative’ operations are complex.

Doctors are concerned that some people with early cancers are having their treatment delayed for 3 months or more, after which time the chances that surgery can be curative become less likely.

Chemotherapy and palliative care have also been affected by COVID-19. In some cases this is because the risks were deemed too high, in others because of a lack of staff to provide even some priority therapies. The good news is that these can – and will – recover quickly once COVID-19 pressure eases.

Doctors have continued to innovate to try and mitigate some of this disruption. Alternative treatments are being used where possible – e.g. hormone therapies for breast and prostate cancer or radical radiotherapy in place of surgery. For other cases, however, there are fewer options –  especially for faster-growing, non-hormone responsive cancers.

Encouragingly, certain hospitals in England have now been designated as ‘cancer hubs’ – such as in London, Manchester, Leeds and several other locations – and are creating ‘COVID-free zones’ for cancer treatment. But right now it’s not clear whether they have access to sufficient testing to prove they’re safe for both patients and staff.

This is one reason why we’re calling for an urgent increase in testing capacity across the UK.

And while every effort is being made to allow clinical trials to continue – with patients on the trial able to continue to receive experiment treatments where possible – other trials are being paused or discontinued, especially for treatments that might be risky should a patient develop COVID-19 or need urgent intensive care.

Current trials have stopped recruiting and many new trials are being put on hold, which will set clinical research back considerably.

Clinicians are largely working without the data they need

We’ve repeatedly heard that staff do not have the data they need to make fully evidence-based decisions about cancer care and how to balance risk.

Many cancer patients –  particularly those currently being treated or with certain medical histories – are at increased risk of complications should they develop a COVID-19 infection.

But many ‘fitter’ patients, especially those with less advanced disease that could benefit from treatment or surgery, are at no greater risk from the epidemic than the general population. We’ve been concerned to hear about cases where these patients are missing out on potentially life-saving treatment.

This is why it’s so important that the testing can be ramped up and plans are in place to treat these patients as capacity becomes available.

NHS staff health and morale are major concerns

We’re aware of the huge anxiety many people with cancer are facing. And many NHS staff are struggling too with the psychological impact of the decisions they’re to make with and for their patients because of the disruption the virus has caused.

And, with most consultations held over the phone, doctors aren’t able to offer the comfort and reassurance they’d like to. They’re aware of and greatly saddened by the distress this is causing patients.

Physical and mental health are growing issues, and staff numbers may reduce yet further, due to long-term sickness and the stress of working through the pandemic.

More COVID-19 tests are urgently needed as many staff feel these are still being ‘rationed’ in a way that is not giving an accurate picture of asymptomatic (or pre-symptomatic) cases, meaning we’re not fully protecting patients and staff. There’s also a huge need for a reliable antibody test to allow hospitals to judge who is safe to return to work.

‘Post Peak Planning’ is crucial

Dealing with the present realities of COVID-19 is challenging enough, and staff across the NHS have been working flat out to reconfigure cancer services to copy with this unprecedented outbreak.

But we also need to the look to the future too.  Health leaders across the UK need to develop a comprehensive and evidence-based plan for how to deal with the huge backlog of people who need care –  for cancer or any other serious disease – after the first COVID-19 peak passes.

The patient tracking lists on which hospitals usually rely for planning care will become even more critical now to enable them to tackle the extraordinary demands that the ‘tsunami’ of non-COVID-19 patients will present.

A developing picture

With our health service seemingly stretched beyond capacity and a rapidly evolving health crisis, we’re yet to uncover the full extent of the disruption COVID-19 will have on cancer services and people affected by cancer.

And while health bodies and governments have noble ambitions for cancer treatment and care, change won’t materialise without adequate resource and a coordinated response combined with mass COVID-19 testing.

Our chief clinician, Professor Charles Swanton, has seen the impact the pandemic is having on patients first hand. “This pandemic is having a major impact on patients with cancer and the direction it’s heading is really concerning. Delays to diagnosis and treatment could mean that some cancers will become inoperable. But it’s not too late to turn this around. Cancer patients shouldn’t need to wait for the pandemic to pass before getting the treatment they need.

“We can create a safe environment for both staff and cancer patients now that testing efforts are escalating quickly. Staff in hospitals around the country are working extremely hard and with more testing of staff and patients – with and without symptoms – we will have hospitals and centres relatively free from COVID-19 where patients can be treated safely, and post-operative complications can be minimised.”

Sara Hiom is the director of cancer intelligence, early diagnosis and clinical engagement at Cancer Research UK

If you have questions about cancer, you can talk to our nurses Monday to Friday, 9-5pm, on freephone 0808 800 4040.

We want to hear from people affected by cancer about the challenges of day to day life and changes to treatment and care due to COVID-19. Tell us how COVID-19 is impacting your life with cancer through our survey.