Figures released this week show the first year of COVID-19 and the impact on health services.
The numbers lay bare what many have seen first-hand – the devastating impact COVID-19 has had on people with cancer, health service capacity and the efforts to recover.
They also give an indication of COVID-19’s legacy and the scale of the challenge. Disruption to cancer screening, diagnosis and treatment has led to more than 45,000 fewer people starting cancer treatment between the start of the pandemic and March 2021 – the so called ‘missing cancer patients’.
Here’s a breakdown of the figures.
Screening was badly affected at the start of the pandemic, with bowel, breast and cervical screening programmes largely put on hold. And with around 210,000 people being screened each week in the UK before the pandemic, we estimate that around 3 million people were waiting for screening by September last year.
Cancer screening services have worked hard to get back up and running again. But this disruption has impacted the number of people diagnosed through this route.
Around 9,200 fewer patients started cancer treatment after a referral from the screening programmes in England between April 2020 and March 2021 – a 42% drop compared with pre-pandemic figures.
A similar pattern is emerging in Scotland, with around 1,200 fewer people starting cancer treatment after being referred from an NHS screening programme between April and December 2020, a reduction of 62% compared to pre-pandemic.
But things are moving in the right direction. The latest figures show that the number of people starting treatment after a screening referral in March 2021 is up 3% on March 2019 in England.
Routine cancer screening invitations are going out and, in some areas, hubs and centres are inviting more people than usual to try to catch up with the people who weren’t invited last year.
Another area that has been heavily affected by COVID-19 was the number of people being urgently referred with suspected cancer symptoms by their GP.
Between March 2020 and March 2021, we’ve estimated that over 380,000 fewer people were referred than normal in the UK, with around 330,000 fewer referrals in England.
Urgent referrals for suspected cancer plummeted at the start of the pandemic, with 120,000 fewer people than normal being referred in April 2020 alone in England. Since then, the number of referrals has been climbing and was back around the normal monthly level in March 2021, with around 15,000 more people referred than in March 2019 in England.
But getting back to ‘normal’ levels isn’t enough. The number of referrals needs to rise well above pre-COVID-19 figures to ensure that the people who didn’t go their GP or who weren’t referred last year are now coming through.
This is beginning to happen for some suspected cancer types. Urgent suspected breast cancer referrals were 6% above 2019 levels in March this year. But this isn’t consistent across the board, urgent suspected lung cancer referrals were still down 24 %, and urgent suspected urological cancer referrals were down 8%.
Urgent suspected cancer referrals are only one part of the picture, with around 1 in 4 people with cancer being diagnosed through this route pre-pandemic. But they’re a good indication of how many people are coming forward and how cancer services are doing across the UK, alongside other figures, including the number of diagnostic tests being carried out.
Most of the figures released cover all diagnostic test activity and aren’t specific to cancer. But we’ve been monitoring 7 key tests that are often used to diagnose cancer – endoscopies (colonoscopy, flexi-sigmoidoscopy, cystoscopy and gastroscopy), CT scans, ultrasound and MRI.
Between March 2020 and March 2021, around 4.6 million fewer of these tests were carried out in England compared with pre-pandemic.
As with urgent suspected cancer referrals, the impact on diagnostic tests was most severe at the beginning of the pandemic and numbers have begun to recover since then. The latest data for March 2021 shows only a 5% drop in monthly number of tests compared to March 2019.
This drop in activity, caused in part by the additional safety measures put in place during the pandemic, has had a knock on effect on how long people are waiting for tests.
In England, around 215,000 people were waiting 6 weeks or more for one of the 7 key diagnostic test in March 2021. It’s an improvement on May last year, when there were around 421,000 people waiting six weeks, but it’s still 12 times higher than March 2019.
Similar trends are being seen in Scotland and Wales, with the number of people waiting over 6 or 8 weeks for a test falling compared with the worst point during the pandemic, but still above pre-pandemic numbers.
Northern Ireland has a similar picture overall based on the latest data from December 2020, with one exception. Radiology waiting times are actually better now than they were pre-COVID-19, with experts suggesting this could be down to better prioritisation and triage.
There’s less timely data available when it comes to cancer treatment. But it was clear at the start of the pandemic and when cases rose sharply towards the end of 2020 that surgery was the cancer treatment most severely impacted by COVID-19, with staff numbers and intensive care capacity both playing a role.
And those who did have surgery had a very different experience, as Jan told us last year.
Other cancer treatments – such as radiotherapy or chemotherapy – were less heavily impacted during the second wave. And governments and health service leaders responded to the impact on cancer surgery by putting plans in place – including making use of independent hospitals – to help ensure vital cancer operations could continue.
These efforts, combined with falling COVID-19 cases and vaccination efforts mean urgent cancer surgeries are now able to go ahead. Most cancer surgery will fall into this urgent category.
But some cancer surgeries – including operations for low-risk prostate cancer, breast reconstruction and stoma reversal – are categorised as less urgent and may still be experiencing delays as the NHS recovers from the pandemic.
Increasing capacity in services so that these patients, as well as those now being diagnosed, can have their cancer treatment is key. This urgency is reflected in NHS England’s £160 million initiative to ‘tackle waiting lists’ and test innovative ways to increase the number of elective operations.
Who’s in the backlog?
On the whole – the figures paint a picture of health services adapting to new pressures. And a public that’s becoming more confident in contacting their GP with suspected cancer symptoms.
But this past year will have a lasting impact. With a pause on screening, a big drop in the number of people who were referred with suspected cancer and some treatments being postponed, the number of people diagnosed and treated for cancer in the last year is a lot lower than we’d expect.
Overall, we’ve estimated that more than 45,000 fewer patients started treatment for cancer in the UK between April 2020 and March 2021, compared to pre-pandemic.
While this figure looks specifically at treatment, it’s largely driven by a drop in the number of people who were diagnosed with cancer in the last year.
These people will be living with cancer without knowing about it. And they need to be diagnosed and treated as soon as possible.
The data available – including treatment data and provision data sources like rapid registration incidence data in England – is helping to build a picture of the ‘missing cancer patients’.
So far, data up to December 2020 show that diagnosing early stage cancers (1 and 2) has been more impacted than the latest stage cancers (stage 4).
This is driven in part by the cancer screening pause and is reflected in the breakdown of cancer types, with data for England suggesting that breast cancers are overrepresented in the cancer backlog.
Based on the numbers starting treatment in England between April 2020 and March 2021, the backlog contains almost twice as many breast cancer cases as would be expected if all cancer types had been equally impacted by COVID-19 delays. Initial data shows around 75% of the fall in breast cancer diagnoses between April and October was due to cases not coming through screening.
The disruption to screening could also help to explain why 50 to 69 year-olds are overrepresented in the ‘missing’ cancer diagnoses.
The drop in the number of early stage cancers may also be due to fewer people going to their GP with potential cancer symptoms – initial estimates suggest around 4 in 10 of the ‘missing’ diagnoses between April and October last year were from cancers not diagnosed via an urgent suspected cancer referral.
Meanwhile, provisional data up to October 2020 show that the number of people diagnosed with cancer after presenting via an emergency route like A&E has been similar to pre-COVID-19 levels so far. This suggests that those with very concerning symptoms, which may relate to late-stage disease, have still been presenting.
There’s a concern that these ‘missing cancer patients’ may see their cancer progress, meaning there may be more emergency presentations for cancer in the coming years. But despite there’s not enough evidence on this yet.
The turning point?
As the country emerges from the most acute part of the COVID-19 pandemic, the UK is at a decisive moment for people affected by cancer in the UK. The UK Government acknowledged the cancer backlog earlier this week in the Queen’s Speech and recovery plans have been launched or are coming in different UK nations.
What #QueensSpeech means for cancer:
✅ Junk Food Marketing restrictions to curb childhood obesity
🌎 UK to lead world in life sciences – medical research charities critical here
🏥 Empower NHS to innovate/‘level up’ – but no mention of staff needed
Positive but more to do..! https://t.co/peID5Xgjd7
— Emlyn Samuel (@emlyn_samuel) May 11, 2021
If governments and health systems across the 4 UK nations do not act decisively, the COVID-19 crisis will be replaced by a cancer crisis. Cancer survival could fall for the first time in generations.
Any plans must also address health inequalities across the UK. Last year we calculated that there are an 20,000 extra cancer cases each year in more deprived areas of the UK. And before the pandemic, people from more deprived areas were not only more likely to get cancer but, for certain cancer types, were also more likely to be diagnosed at a late stage and to have trouble accessing cancer services. These inequalities could be further widened by the pandemic.
Earlier this week, the UK Government proposed an NHS Health and Care Bill which will “Give the NHS and local authorities [in England] the tools they need to level up health and care outcomes across the country, enabling healthier, longer and more independent lives.” This has never been more important.
If governments and health systems step up, this could be the turning point – the beginning of a concerted effort to transform UK cancer survival from lagging behind other countries to being one of the best in the world.
It will take ambition. And investment.
We’ve united with 46 other charities as part of the One Cancer Voice coalition to call on governments across the UK to provide the NHS with the resources to clear the backlog and lay the groundwork for world class cancer services in the future.
This will require investment in workforce and equipment, support for cancer research and the translation of research into patient benefits and a focus on reducing inequalities by reaching those with the poorest cancer outcomes.
We’ve spent decades speaking out for people with cancer. And we’re not stopping now.
We’ll continue to work with charities, governments and health services to help clear the backlog and ensure that people with cancer across the UK get the best diagnosis, treatment and care possible.
Notes on figures
Comparisons to ‘pre-pandemic’ or ‘normal’ are to the equivalent months in 2019, and numbers have been adjusted for differences in working days where appropriate.
We’re using 2019 as a pre-COVID baseline now that we have data from a full year into the pandemic, but we know that as cancer incidence is overall rising over time, 2019 figures are lower than we’d expect for 2020 and particularly 2021 – so we’re probably slightly underestimating the true backlog.