Lifting the lid on bowel screening – why doesn’t everyone invited take part?

In 2006, bowel screening began to be rolled out – for slightly different age groups – across the NHS in England, Wales, Scotland and Northern Ireland. It uses the faecal occult blood test (FOBT), which involves sending a stool sample to a laboratory, where it’s tested for traces of blood – which can, among other things, be an early sign of bowel cancer.

There’s plenty of evidence that it works: people who take part in the screening programme have a 25 per cent lower chance of dying from the disease later in life. And although it’s not perfect, studies have shown that that it does diagnose some bowel cancers earlier. It may even reduce bowel cancer developing in the first place, by allowing doctors to remove pre-cancerous polyps.

Yet, despite these benefits, the proportion of people who take up their bowel cancer screening invitation is disappointingly low. For example, in England only 55-60 per cent of people return their kits, and in some areas of the country, it’s even lower: in some parts of London, it’s as low as 33 per cent.

But why? Some people might just decide that they don’t want to take part. But it’s also likely that others are missing out because they don’t know enough about screening.

So understanding why people are missing out on bowel screening is becoming a key issue.

Thankfully, a number of schemes are exploring why people are reluctant to take part, such as the ACE (Accelerate, Coordinate, Evaluate) Programme that Cancer Research UK is supporting. These projects are trying to increase participation in low uptake areas – and ultimately save lives.

So let’s look at how FOBT bowel screening works (see slideshow) and at some of the work under way to help more people take part.

Why aren’t some people taking the test?

“We do get letters from some people invited to participate who are horrified and quite disgusted at the concept of collecting and then sending their stool samples through the post,” says Sally Benton, director of the Guildford bowel screening hub. And this is indicative of an attitude which might put some people off from taking part in bowel screening.

According to Martin Ledwick, head information nurse at Cancer Research UK, there are several reasons why people ignore their invitation.

One key reason, he says, is “fear and fatalism” – the belief that cancer is inevitable, and there’s nothing to be done.

“Others may be put off because they find the idea of handling their poo disgusting,” he says.

There are also practical issues at work too: “Older people may have arthritis or mobility problems that makes catching a poo sample before it hits the toilet bowl too difficult,” Ledwick says.

People with positive screening tests are referred for a colonoscopy. Watch a video about having a colonoscopy.

And some groups seem to be less likely to take up bowel screening than others. Evidence suggests that the lowest uptake is in areas with high socio-economic deprivation or high ethnic diversity, and among some religious groups, where people are less engaged with the healthcare system.

For instance, Tower Hamlets, Newham, and City & Hackney – which have poor screening uptake – have a large South Asian and Muslim population. Results from work in the area suggest that cultural attitudes to handling stools , combined with lower levels of English literacy, mean that people don’t always fully understand the information provided in the screening kits.

Judith Shankleman, senior public health strategist in Tower Hamlets, was part of a project using bilingual advocates calling people from surgeries to promote bowel screening over the phone. They saw a nine per cent increase in uptake in 18 large GP practices across all three boroughs.

“It’s not just about the total number of people taking up bowel screening – it’s about making it accessible to everyone – especially to people who don’t understand it or feel worried about what the test might find,” she says.

There are others who need to be considered too: those who are visually impaired, or who are living with mental disorders and learning disabilities. All of these people are less likely to have the right support or information to complete a bowel screening test correctly – or even receive a kit in the first place, as you need to be registered with a GP.

Across the country there are efforts to change that. Some of the ACE projects – like the North East and Cumbria Learning Disability Network vulnerable groups project – are trying to improve things by helping regional screening centres, known as ‘hubs’, to send specially-designed bowel screening invitations to people with learning disabilities.

The role of GPs

Recently, ACE Bowel Screening project members met at the Guildford screening hub to share information about what they’re doing to improve screening uptake in their areas, and how the hubs can get involved in the process. And one of the themes that stood out was how projects are working with GPs.

While GPs aren’t involved in bowel screening directly, there has been encouraging evidence that, when GPs provide information about this, people respond well.

For example, one ACE bowel screening project is sending text messages from GPs encouraging people who don’t respond to bowel screening invitations to take part. Another is putting people’s GP details on their invitation letters, so that they appear more personal and people feel more inclined to send their completed kits back to the hub.

”GPs have a pivotal role in improving screening uptake,” says Brian Knowles, programme lead for ACE Programme bowel screening projects. ‘’At least 10 per cent more people who are sent bowel screening kits and further information through the post are likely to do the test, if they are also sent an endorsement letter from their GP’’.

Making sure screening services are as accessible as possible

Initiatives like these are uncovering the most effective ways to increase uptake. It’s vital, life-saving work. In the words of one patient diagnosed through screening “My early diagnosis meant it was just an ‘unpleasant episode”.

‘Thank you’ letters on the wall of the Guildford screening hub

Another development that we’re eager to see rolled out across the UK is a new type of bowel screening test called the Faecal Immunochemical Test (or FIT for short). Studies have shown that uptake can be increased by switching from FOBT to FIT, and a major factor could be that people find it easier to use – to start with it only needs one sample, rather than three.

Studies suggest FIT would help increase uptake in the harder to reach groups, but other barriers would remain such as informing hard to reach groups – so the ongoing work to reduce other inequalities remains vital.

Scotland has already committed to bringing in FIT, and the National Screening Committee (NSC), an advisory body to Ministers and the NHS, is due to review bowel screening in the UK.

Whatever the NSC decides, screening hubs like the one in Guildford can play a crucial role. Not only by carrying on their daily business of diagnosing bowel cancer earlier through FOBT, and tackling people’s concerns through their helplines, but also by helping to address bowel screening inequalities by working together with local projects.

“It’s the role of the hubs to support these projects,” says Sally Benton, director of the Guildford bowel screening hub. “We want to know more about what’s going on and what works.”

The people served by the Guildford hub certainly appreciate her team’s work – the ‘thank you’ letters they’ve sent in decorate almost a whole wall.

So, together with those working in the screening hubs across England and the rest of the UK, we will keep working hard to ensure that the nation’s bowel screening services can help many more people spend many more years with their family and friends.

– Eshe Jackson-Nyakasikana is a stakeholder engagement and communications officer for the ACE programme at Cancer Research UK

Find out more: bowel screening information