Cancer waiting times: Who are the long waiters?

Receiving a cancer diagnosis is never easy. But it can be particularly stressful when that process involves long periods of waiting for test results or waiting to start treatment.

We regularly write about the state of current performance against NHS England cancer waiting times targets. In the first half of 2024, we have seen some improvement with the Faster Diagnosis Standard (FDS) being met over several months for the first time since its introduction. The FDS sets out that at least 75% of people should be diagnosed, or have cancer ruled out, within 28 days of an urgent referral.

However, one area in which we have been consistently lagging is the 62-day standard.

This standard stipulates that 85% of people in England should receive their diagnosis and start their first treatment within 2 months (or 62 days) of an urgent referral.

But that’s not happening. The last time the target was met was back in December 2015, and over recent years performance against this target has been deteriorating.

In fact, some people are having to wait much longer than 62 days. We’re seeing a rise in ‘long waiters’ - people who wait for over 104 days to begin their treatment.

But who are these long waiters? At Cancer Research UK, we’ve recently carried out research in partnership with the National Disease Registration Service (NDRS), part of NHS England, to find out more.

The rise of the long waiters

The Cancer Research UK and NDRS analysis found that over 1 in 10 patients who started cancer treatment between April and September 2022 had waited over 104 days from urgent suspected cancer referral to treatment.

This analysis compared patients starting treatment following an urgent suspected cancer referral in the financial year of 2017/2018 to more recent years and found that patients starting treatment in the first half of 2022/2023 were over three times more likely to wait over 104 days.

As we’ll see later in the article, lots of factors can impact on an individual’s waiting times. For example, people with a certain cancer type may on average wait longer than others with a different cancer type because of the different investigations needed to diagnose or rule out cancer. However, this data was adjusted for cancer type, gender, age and deprivation, and so indicates that the increase in the percentage of people waiting over 104 days likely can’t be solely explained by potential changing patient characteristics.

But let's delve further into the specific characteristics of these long waiters.

Source: NHS England Cancer Waiting Times. England only. April 2017 to September 2022. Data accessed April 2024.

The Cancer Research UK and NDRS analysis found that over 1 in 10 patients who started cancer treatment between April and September 2022 had waited over 104 days from urgent suspected cancer referral to treatment.

This analysis compared patients starting treatment following an urgent suspected cancer referral in the financial year of 2017/2018 to more recent years and found that patients starting treatment in the first half of 2022/2023 were over three times more likely to wait over 104 days.

As we’ll see later in the article, lots of factors can impact on an individual’s waiting times. For example, people with a certain cancer type may on average wait longer than others with a different cancer type because of the different investigations needed to diagnose or rule out cancer. However, this data was adjusted for cancer type, gender, age and deprivation, and so indicates that the increase in the percentage of people waiting over 104 days likely can’t be solely explained by potential changing patient characteristics.

But let's delve further into the specific characteristics of these long waiters.

Source: NHS England Cancer Waiting Times. England only. April 2017 to September 2022. Data accessed April 2024.

Patients living in deprived areas were more likely to wait over 104 days for treatment

We know that inequalities can play a role in how likely someone is to get and survive cancer.

And this research has shown that inequalities can also impact on how long someone waits for a cancer diagnosis or to begin treatment.

Patients living in the most deprived areas had the highest percentage waiting over 104 days for treatment. They were 33% more likely to wait over 104 days when compared to the least deprived quintile – that’s even when gender, age, cancer site, financial year and the trust where a patient received a decision to treat were controlled for.

Other factors affecting long waiters

The type of cancer someone has can also impact on how likely they are to be a long waiter.

Patients starting treatment for breast or skin cancer were the least likely to have waited over 104 days.

Patients starting treatment for lower gastrointestinal or urological cancer were the most likely to wait over 104 days.

Patients were also more likely to be a long waiter if they were diagnosed at stage 1 or 2 - this means when the cancer is at an early stage – and for some early stage cancers, regular scans over a period of time is a normal diagnostic process. Having a comorbidity score of greater than 0 is also more likely for long waiters. The comorbidity score is a measure which takes other pre-existing conditions into account, with a score of 0 (zero) meaning someone has no comorbidities.

Finally, age can also have an impact, with those aged 60-69 being the most likely to be long waiters.

So what are the specific reasons behind these longer waits?

Patients living in more deprived areas were more likely to wait over 104 days for treatment

We know that inequalities can play a role in how likely someone is to get and survive cancer.

And this research has shown that inequalities can also impact on how long someone waits for a cancer diagnosis or to begin treatment.

Patients living in the most deprived areas had the highest percentage waiting over 104 days for treatment. They were 33% more likely to wait over 104 days when compared to the least deprived quintile – that’s even when gender, age, cancer site, financial year and the trust where a patient received a decision to treat were controlled for.

Other factors affecting long waiters

The type of cancer someone has can also impact on how likely they are to be a long waiter.

Patients starting treatment for breast or skin cancer were the least likely to have waited over 104 days.

Patients starting treatment for lower gastrointestinal or urological cancer were the most likely to wait over 104 days.

Patients were also more likely to be a long waiter if they were diagnosed at stage 1 or 2 - this means when the cancer is at an early stage – and for some early stage cancers, regular scans over a period of time is a normal diagnostic process. Having a comorbidity score of greater than 0 (zero) is also more likely for long waiters. The comorbidity score is a measure which takes other pre-existing conditions into account, with a score of 0 meaning someone has no comorbidities.

Finally, age can also have an impact, with those aged 60-69 being the most likely to be long waiters.

So what are the specific reasons behind these longer waits?

The reasons behind delayed treatment

There are several reasons why a patient might experience a delay in starting their treatment.

Sometimes a delay might be initiated by a patient, such as if they decide to decline or cancel a diagnostic test, appointment or treatment date.

There can also be a medical reason, such as the patient being temporarily not well enough for treatment or a complicated diagnostic pathway, that causes delay in either diagnosis...

...or treatment.

But the most common reason for delay in April–September 2022 long waiters was healthcare provider-initiated delay. This type of delay can be down to a range of things, such as a shortage of beds for treatment or low staff capacity.

This is the standard patient pathway from referral to treatment.

For the long waiters, the longest interval in this pathway was from referral to being informed of diagnosis.

This shows that delays in the period up to cancer diagnosis make up one of the main drivers of these increased waits, although it is important to note that waiting times performance from decision to treat to receiving treatment for long waiters is also far below target levels.

The impact of waiting

It can be difficult to quantify exactly how increased waiting times can impact on patients, but evidence so far suggests that the impacts are likely negative.

At an already stressful time, lengthy waits for a cancer diagnosis and treatment can impact negatively on a patient's experience and mental health.

Importantly, some studies have suggested that delays of even a few weeks could significantly impact cancer mortality for some cancer types. 

We know that cancer that’s diagnosed and treated at an early stage, when it isn’t too large and hasn’t spread, is more likely to be treated successfully. Prompt diagnosis and treatment underpin this, so it’s important to get cancer waiting times back on track.

What can be done?

The significant challenges that the NHS in England has experienced while trying to achieve cancer waiting times standards, despite the efforts of dedicated staff across the health system, are well known.

This research has helped provide us with more insight into the characteristics of those facing the longest waits for cancer care following an urgent suspected cancer referral. But with thousands of cancer patients waiting over 104 days to start treatment each month, and the likelihood of being a long waiter increasing significantly in recent years, what can be done to improve the situation for patients?

As we’ve seen, the high proportion of ‘healthcare provider-initiated delays’ experienced by long waiters reflects a health system creaking at the seams due to rising cancer incidence and insufficient investment in capacity to meet this increased demand.

The finding that the longest waits tend to be experienced while waiting for tests and results demonstrates that the largest bottleneck in the system remains within diagnostic services. We recently published A Full Diagnostic in which we outline the current state of play of diagnostics in England and also highlight the steps needed to deliver a world-class cancer service.

Importantly, when it comes to addressing these issues, the Government and NHS England must take care not to simply move the bottleneck. Rather they need to make strategic investments in capacity alongside innovation and reform across the cancer pathway through a long-term strategy for cancer.

It is also vital that any investment and focus reflects the varying needs in the most deprived areas. As these results show, long waits are not being felt equally across different socio-economic groups, which, without targeted action, risks further compounding the inequalities seen in cancer outcomes.

Beating cancer means beating it for everyone

While this research offers a fresh insight on patients facing the longest waits for cancer care, many of the driving factors are not new. In Longer, better lives, Cancer Research UK’s manifesto for cancer research and care, we explore many of the same issues, and offer more detailed recommendations on how they can be addressed.

It is important to remember that cancer waiting time targets are important not because they are a description of ‘what good looks like’. They represent minimum expectations that people should have for their cancer care in the health service. They also provide a vital indicator of the health of cancer services – a warning light that this report shows is lighting up.

But against this challenging backdrop, there is a huge opportunity for the new Labour government to make this moment a real turning point for cancer by delivering on their Health Mission commitment to bring cancer waiting times down, boost early diagnosis and improve cancer survival. To achieve this a bold, long-term strategy for cancer is needed. Government must commit to this, and Cancer Research UK stands ready to work with them to help develop and deliver it.

Cancer News

The rise of the long waiters

Patients living in deprived areas were more likely to wait over 104 days for treatment

Other factors affecting long waiters

Patients living in more deprived areas were more likely to wait over 104 days for treatment

Other factors affecting long waiters

The reasons behind delayed treatment

The impact of waiting

What can be done?

Beating cancer means beating it for everyone

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