Mountain of almost 50,000 people still missing a cancer diagnosis in the UK as NHS already struggling to cope with existing demand

Leading cancer charity reveals the scale of the challenge still to hit the NHS and warns cancer services urgently need more support to deal with a rise in patients with record numbers of people already waiting too long to start treatment

Macmillan Cancer Support is calling on the Government to ensure the severe capacity pressures within cancer services are addressed in the upcoming Elective Recovery Plan

• A year and a half on from the start of the pandemic, Macmillan Cancer Support is today warning there is still a staggering backlog of more than 47,000 people ‘missing’ a cancer diagnosis in the UK[i] as the NHS buckles under the strain of current demand.
• In addition, more than 24,000 of those who began cancer treatment during the pandemic in England waited too long following their diagnosis, including a record 2,000 in September alone[ii], demonstrating that the NHS in England is already struggling to keep up with the current number of cancer patients. Macmillan is deeply concerned about how cancer services will cope when the ‘missing’ patients do eventually receive their diagnoses, particularly as there is a severe shortage of cancer nurses across the NHS[iii].
• Without action from the Government, Macmillan warns that many more people will continue to require care from a system that does not have enough staff or resources to ensure they are given the best possible treatment and support, leading to heightened anxiety and distress for many as they face long waits for answers about their next steps or disruption to their treatment. For some, these waits could mean a worse chance of survival.
• The stark findings are laid bare in a striking new graph, which paints the clearest picture yet of the estimated number of people missing a cancer diagnosis since the pandemic began[iv] — demonstrating the size of the challenge awaiting the NHS when these people finally enter the system.
• The charity’s new analysis shows that early signs of improvement to clear the cancer backlog over summer may have stalled[v]. Worryingly, further disruption from Covid-19 this autumn and winter could see the number of missing diagnoses increase even further[vi].
• Further Macmillan analysis shows that the NHS in England would need to work at 110% capacity for 13 months in a row to catch up with the number of people who should have started cancer treatment since March 2020[vii] — and the charity wants the Government to do more to help the NHS achieve this.
• As the NHS enters yet another difficult winter, Macmillan is urgently calling on the Government to ensure the upcoming Elective Recovery Plan addresses these severe capacity issues, to ensure NHS England has enough staff to treat, care and support everyone with cancer after their diagnosis.

Steven McIntosh, Executive Director of Advocacy and Communications at Macmillan Cancer Support, says:

“Nearly two years into the pandemic, there is still a mountain of almost 50,000 people who are missing a cancer diagnosis. Thousands more are already facing delays and disruption as they go through treatment. While hard-working healthcare professionals continue to do all they can to diagnose and treat patients on time, they are fighting an uphill battle. Cancer patients are stuck, waiting in a system that doesn’t have the capacity to treat them fast enough, let alone deal with the backlog of thousands who have yet to come forward.”

“The Government has promised an NHS Elective Recovery Plan. This must show how it will tackle spiralling pressures on cancer services. It has never been more crucial to boost NHS capacity to treat and support everybody with cancer, so people receive the critical care they need now and in the years to come.”

• Further new data from Macmillan also shows that patients themselves are concerned about the future of cancer care. The number of people living with cancer in the UK who think cancer services will remain a priority for the NHS at times of pressure in future has dropped from three in four (76%) to just over half (56%) in recent months.[viii].
• This is mirrored by the experiences of Macmillan Support Line staff, who are seeing a considerable increase in numbers of people calling the helpline with issues stemming from the cancer backlog and pressure on their clinical care teams.

Ellen Lang, Service Manager on the Macmillan Support Line, says:

“We’re taking an increasing number of calls from people who need help or advice after experiencing a delay to their diagnosis because of issues related to Covid-19 or because they can’t get through to their clinical team to get any of the questions they have answered. People are often incredibly distressed about how delays are affecting their prognosis or treatment options, with many feeling like their survival chances are being impacted by the enormous pressures on the NHS.

“We’d encourage anyone who is struggling with delays to their diagnosis or treatment to please get in touch with Macmillan for support or advice on 0808 808 00 00. Whoever you are, wherever you are, Macmillan is here to help you.”

Further analysis:

• The number of people with missing diagnoses varies considerably by cancer type[ix]
• Prostate cancer has seen the biggest impact, with confirmed cases in England down by almost a quarter (-23%) compared with pre-Covid expectations
• The next most affected cancer types are multiple myeloma (-14%), melanoma (-13%), lymphoid leukaemia (-12%) and breast cancer (-12%)
• There is further cause for concern for breast cancer in particular, as the number of women diagnosed with advanced breast cancer has soared by up to almost half as much again compared with pre-Covid[x]
• Since June 2020, the number of women diagnosed with stage 4 breast cancer has been consistently higher than expected until at least June 2021, peaking at 148% of the pre-pandemic average in February this year, while the number of women diagnosed with early-stage breast cancer has been repeatedly lower than before Covid
• This reinforces fears that the delays and disruption caused by the pandemic are leading to more and more people being diagnosed later, meaning they are likely to need more intensive treatment and support, and potentially affecting their chances of survival too.

UK Covid-19 cancer backlog — estimated number of people ‘missing’ a diagnosis[xi]

Feb-20

0

Mar-20

900

Apr-20

11800

May-20

21200

Jun-20

30300

Jul-20

37200

Aug-20

41200

Sep-20

43400

Oct-20

45200

Nov-20

46100

Dec-20

46600

Jan-21

48400

Feb-21

50000

Mar-21

50500

Apr-21

49300

May-21

47300

Jun-21

47700*

Jul-21

47600*

Aug-21

47600*

* Based on a combination of partial data and assumptions that previous trends continue, so presented with less certainty

-Ends-

Notes to editors

For further information, please contact:

Katie Mallion, Media & PR Manager, Macmillan Cancer Support

Out of hours: 07801 307068

KMallion@macmillan.org.uk

About Macmillan Cancer Support:

At Macmillan, we give people with cancer everything we’ve got. If you’re diagnosed, your worries are our worries. We will move mountains to help you live life as fully as you can. And we don’t stop there.

We’re going all out to find ever better ways to help people with cancer, helping to bring forward the day when everyone gets life-transforming support from day one.

For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk

To give, fundraise or volunteer call 0300 1000 200 or visit macmillan.org.uk

[i] Gap in number of diagnoses is estimated by the difference between observed cancer diagnosis activity and the expected cancer diagnosis activity for every month from March 2020 onwards. Expected activity is based on a monthly average from 2019 and weighted by the number of working days in the month. Acknowledging that reported activity does not capture all cancer diagnoses (for example in Northern Ireland and Scotland it just includes pathology confirmed diagnosis), we apply the % gap between observed and expected activity to the total number of cancer diagnoses we expect each month, based on latest official incidence data releases for each nation. Gaps are calculated separately for each nation using different diagnosis activity data: for England we use the Rapid Cancer Registration Dataset (NCRAS); for Scotland the Cancer Pathology dashboard (Public Health Scotland); for Northern Ireland the Patients with Pathology Samples Indicating Cancer report (NICR); for Wales we use first definitive treatment counts reported within Cancer Waiting Times as a proxy for diagnosis activity and we apply to the previous month to account for the expected lag between diagnosis and treatment. Please note these estimates are based on the best data currently available, however this data has been produced under an accelerated timescale in order to provide insights in as timely a manner as possible during the Covid-19 pandemic, and it remains subject to further changes and updates. Findings presented here may therefore change based on future data releases.

[ii] NHS England. Cancer Waiting Times — National Time Series Oct 2009 — September 2021 with Revisions. Figure refers to the 24,055 people who started treatment between March 2020 and September 2021 and who had waited more than one month to start treatment following a decision to treat

[iii] Macmillan Cancer Support. Cancer nursing on the line: why we need urgent investment across the UK. September 2021.

[iv] As per reference i. Data for June 2021 to August 2021 is based on a combination of partial data and assumptions that previous trends continue, so is given different shading on the graph to show this is presented with less certainty

[v] As per ref i, ii and iv. The latest available data shows little sign of progress in clearing the backlog in cancer diagnoses between July and September 2021

[vi] As per reference i. Cancer registrations fell during January and February 2021 amidst reports of winter pressure strains in the NHS.

[vii] NHS England. Cancer Waiting Times — National Time Series Oct 2009 — September 2021 with Revisions. Macmillan analysis shows a 6.6% drop in first cancer treatments between March 2020 and September 2021 compared to 19 months of the 2019 average. This drop of 32,473 treatments is equivalent to the increase we would see if first treatments were delivered at 110% of pre-pandemic 2019 rates for 13 months.

[viii] The number of people living with cancer in the UK who think cancer services will remain a priority for the NHS at times of pressure in the future has dropped from 76% in February 2021 to just 56% in August 2021. The drop of 20 percentage points from a starting point of 76% equates to a proportionate drop of more than a quarter (26%). Sources: Macmillan Cancer Support/YouGov survey of 2,156 adults with a previous cancer diagnosis. Fieldwork was undertaken between 16th February — 6th March 2021. The survey was carried out online. The figures have been weighted and are representative of UK people living with cancer (aged 18+); Macmillan Cancer Support/YouGov survey of 2,032 adults with a previous cancer diagnosis. Fieldwork was undertaken between 30th July — 15th August 2021. The survey was carried out online. The figures have been weighted and are representative of UK people living with cancer (aged 18+)

[ix] England Rapid Cancer Registration Dataset (NCRAS). Registrations between March 2020 and July 2021 were compared with 2019 figures.

[x] As per ref ix. Macmillan analysis finds new breast cancer diagnoses at stage 4 to be at 148% of 2019 levels in February 2021, with 133 registrations reported compared to only 90 expected. Between December 2020 and June 2021 we find 844 stage 4 breast cancers reported, 29% more than the 653 expected. See ref i for how expected estimates are calculated.

[xi]As per ref i. Data for June 2021 to August 2021 is based on a combination of partial data and assumptions that previous trends continue, so this is presented with less certainty