Help us to stop bowel cancer

Diagnosing bowel cancer early – a service at breaking point

By Asha Kaur, Head of Policy and Campaigns, Bowel Cancer UK

Earlier this month our Chief Executive, Deborah Alsina, blogged that lack of capacity to carry out tests for bowel cancer is the root cause for many of the challenges facing the disease right now.

With today’s publication of waiting times data for England showing that at some trusts as many as 63% are waiting more than the recommended waiting time target of six weeks, the challenges the NHS face to improve early diagnosis of bowel cancer are even more apparent.

In this blog I take a look at what the waiting time data tells us, the wider impact that a lack of endoscopy capacity is having and what needs to happen to make sure patients get the right test at the right time.

The right test

So what are the tests for bowel cancer? Well, a colonoscopy and flexible sigmoidoscopy are the key tests for diagnosing bowel cancer. These can detect cancer at the earliest stage of the disease, when it is more treatable, and even prevent cancer through the removal of polyps during the procedures. In fact nearly everyone diagnosed at the earliest stage of bowel cancer will survive, so getting timely access to these tests is really important.

The right time

But data published today by NHS England shows that many people aren’t getting access to these tests as quickly as possible. NHS guidance state that less than 1% should be waiting beyond the six week waiting time target. At the end of February, 26% of hospitals were in breach of this target for colonoscopy and 22% of hospitals for flexible sigmoidoscopy, meaning nearly 2,000 people were waiting longer than six weeks for one of the key diagnostic tests for bowel cancer. 

There is also stark variation in waiting times between hospitals ranging from 63% of people waiting for more than six weeks for a colonoscopy at North Bristol NHS Trust, who have a waiting list of 537 people, to no one waiting more than six weeks at Barts Health NHS Trust, who have a waiting list of 488. The variation is similar for those waiting for a flexible sigmoidoscopy.

The referral to have these tests is a crucial part of the patient pathway – how soon a patient is referred for tests for bowel cancer determines how soon a diagnosis can be made or a patient given the all clear. But it’s also an important way to determine how well diagnostic services for bowel cancer are performing. So why are some services struggling to see patients on time?

Increasing demand

One of the reasons why waiting times for these tests are so high is that endoscopy units, who carry out these tests, are struggling to deal with the amount of people being referred. Demand for endoscopy tests has been increasing dramatically over the last few years - a trend that is set to continue. In fact, reports estimate that nearly a million more endoscopies in England alone will be needed year on year to meet this increasing demand. This is due to a number of factors, such as an ageing population, increase in symptom awareness and roll out of new screening programmes.

But despite the increasing demand for services, this hasn’t been matched with investment to increase capacity to meet this. The lack of capacity is not only impacting on the length of time people are waiting for these crucial diagnostic tests but also on the implementation of a number of other initiatives that are vital to ensuring more people are diagnosed early with bowel cancer.

Some of these are:

Introduction of the Faecal immunochemical test (FIT)

While we fully support and welcome the introduction of the simpler and potentially more accurate bowel cancer screening test – FIT – in England, Scotland and Wales, we’re greatly concerned by the impact that a lack of colonoscopy capacity could have on its implementation. One of the reasons why FIT can be more accurate is that it is a quantitative test. This means it can be adjusted to make it very sensitive to hidden traces of blood, so it could pick up more cancers, or less sensitive, so it will pick up fewer cancers.

If we’re to detect more cancers earlier then it’s crucial that FIT is brought in at a level to detect as many cancers and pre-cancerous cells as possible. But as our Chief Executive, Deborah, highlighted in her blog, it isn’t possible to set FIT at a high sensitivity level right away because it would mean more people are referred for colonoscopy; and with services already at breaking point, they would not be able to cope with the large amount of additional referrals that a highly sensitive FIT would produce without a significant increase in diagnostic capacity.

Roll-out of bowel scope screening (BSS)

In 2010 following ground-breaking research led by one of our medical advisors, Professor Wendy Atkin, the Government committed to introducing an additional screening test in England - a one-off flexible sigmoidoscopy at age 55. Latest research found that this could prevent more than half of potential bowel cancers from developing and two thirds of deaths. However the roll-out of this screening programme is not without its problems. Although most screening centres are now offering BSS, some are struggling to roll out the test to their full population because they are unable to cope with the extra demand created by the introduction of BSS.

Surveillance of people at high risk of bowel cancer

A lack of capacity is also impacting on people who are at high risk of bowel cancer, through having a genetic condition, such as Lynch syndrome. Because their risk is so high, in some cases up to 80%, people who have Lynch syndrome should be placed in a surveillance programme to receive regular colonoscopy every 18 months to two years to help reduce their risk of bowel cancer. However those at high risk are often made to wait unacceptable lengths of time before being seen. Our research found that 49% of respondents to our survey on Lynch syndrome had experienced delays to their planned colonoscopy appointment, with 78% of these waiting more than six weeks beyond their planned procedure date. That’s why we launched a petition calling for urgent improvements to the diagnosis and management of people with Lynch syndrome.

Cancer Strategy

The cancer strategy for England, published in 2015, sets out a number of welcome ambitions and recommendations to achieve world class cancer outcomes by 2020. This includes the aim to drive improvements to earlier diagnosis – many of which could have a positive impact on survival for bowel cancer.  However the success of these recommendations aimed at improving early diagnosis of bowel cancer rests on having the endoscopy capacity to deliver them and more specifically, the workforce.

More needs to be done

We’ve been raising this issue with key decision-makers for many years, published two reports highlighting the challenges and solutions and launched the right test, right time campaign.

To date, however, there’s been very little movement in dealing with this issue comprehensively – a lack of diagnostic capacity remains the elephant in the room. The Government have made a few commitments to addressing the issue but unfortunately they simply don’t go far enough. Here are some of them:

1.       Investing in non-medical endoscopists by 2018

While this initiative to train 160 non-medical endoscopists is welcome and will help to alleviate some of the pressures that endoscopy units face, this is not enough to cope with the number of referrals that are expected over the next few years.  In fact the non-medical endoscopists (NMEs) are being trained to deliver BSS, and so any extra capacity they will provide will be taken up with this.

 2.       Workforce review and action plan

The Implementation Plan for the Cancer Strategy announced that Health Education England would assess current demand and capacity of endoscopy services and develop an action plan for future services by March 2017. While the assessment of current demand has been published, the action plan has yet to materialise. It’s imperative that the Government develop a long-term plan for dealing with future endoscopy workforce requirements. Not enough progress is being made fast enough and with three years left to implement the cancer strategy, this is really concerning.

3.       Diagnostics fund

As part of the Government’s commitment to improving early diagnosis they announced they would spend up to £300 million more on diagnostics every year by 2020. To meet the predicted increase in demand, it is vital that there is greater investment but detail is needed on how this money is being spent. It is not clear yet what improvements have been made as a result of this funding and what additional capacity for endoscopy has resulted from it.

The case to invest is clear

Given the wide ranging impact that increasing demand and a lack of capacity is having on ability to provide services for bowel cancer, the case for urgent investment is clear. Investing in diagnostic services for bowel cancer is critical to ensuring units have sufficient workforce and infrastructure to carry out endoscopy and that all units are working as efficiently as possible. We need to do more than just papering over the cracks. We need to ensure diagnostic services for bowel cancer are fit for the challenges of the 21st century.

That’s why we’re calling for a national endoscopy strategy and a training programme as a solution to the mounting pressure on endoscopy units. We hope to work with Government, NHS England and clinicians to ensure a sustainable endoscopy service that has the capacity to meet future demand.