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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.

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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.

Watch a video about having a colonoscopy

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”.

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‘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

Comments

John July 20, 2015

I wonder how out postal workers feel about handling mail containing and possibly contaminated with faecal matter, just a thought.

Michael Rumsey July 17, 2015

I agree with the reasons stated above why people do not take part but personally i have found the FOBT test easy to do and have also had a colonoscopy which was all clear.I would want to know if I had cancer and have a chance of being cured than live in fear, better knowledge and understanding of the facts would help most people take part I am sure which I certainly received at every stage.

Frankie Marlton July 14, 2015

I had this test last November 2014 and have been diagnosed with terminal bowel cancer this May 2015.. Am I to conclude that the test failed to pick up the my cancer as you only appear to rest for blood within the stools? Maybe if the tests were more stringent then I would have been diagnosed earlier with the possibility of surgery. That is now too late.

Henry Scowcroft July 14, 2015

Thanks for all your comments. Mary & Peter – You can find out who is eligible for screening here.

If you are, and you are registered with a GP a test will be sent to you in the post. If you are above screening age in England or Scotland you can request to be sent a kit, in England on this website, or on this website in Scotland.

Jacqueline – Unfortunately there is no simple blood test for cancer – there are over 200 different types of cancer, all of which can act differently so creating one test would be very difficult. Some people with a family history of cancer may be at higher risk themselves, these people might be advised by their doctor to have a genetic test, you can find out more about people at a higher risk of bowel cancer here. We know that some people can be put off completing their bowel screening test, and we recently ran a campaign to try to help remove some of the practical barriers people face. The campaign included sample packs that contained ‘poo catchers’ and latex-free gloves.

Janice Clarke July 13, 2015

My Dad had bowel cancer, and recently passed away after a 13 year battle against the disease. Where is my kit?

Kev Thomas July 8, 2015

can’t understand the thought process in not sending it back. If / When I get one i will get returned pronto

Raymond Screen July 7, 2015

five years ago I took the test and it save my life thanks to the screening staff , for finding I had bowel cancer. The test is easy Bowel cancer is not, please do the test its free

Isabel King July 4, 2015

I don’t really understand what the problem is. ‘Handling stools’ makes it sound like you’re juggling with them! It’s a pretty straightforward procedure and with a little effort (no pun intended) it is potentially a life saver.

Chris July 4, 2015

My wife and I have both tested positive after using the kits and had a follow up colonoscopy. Fortunately no cancer was found, but I had a polyp removed and my wife was diagnosed with a treatable condition. Thank you, a very valuable test.

Mary Goldingay July 3, 2015

How do I go about having a screening test

Mark Black July 3, 2015

A useful and very helpful presentation

Dorothy Croft July 3, 2015

I have done this test for a few years now and do not have a problem with it, it is good that we have tests like this and seems sensible to me as its free and could save your life. Thank you for the good work you do.

John July 3, 2015

I’m not particularly squeamish when it comes to matters scatalogical but I do find the bowel screening test very onorous – you can’t do it at work, or indeed anywhere that there aren’t handwashing facilities close to the lavatory. Then you have to dispose of the remains. What is needed is a simple wet wipe that changes colour in the presence of the factor under investigation.

Jacqueline Chance July 3, 2015

Despite my mother dying 6 months ago of bowel cancer the idea of having to handle my poo and put it on the card digests me and I have not returned my card. Can cancer not be detected through a blood test on those of us who are at high risk? My mother also had breast cancer 33 years ago and 90% of her 11 siblings died of cancer. One of my cousins died in her late 60s of ovarian cancer.
The idea of handling poo horrified my husband and he too refused to return the test.

Avril garrow July 2, 2015

Very informative

Sarah July 2, 2015

I think the test is fairly difficult in some situations. I’m only 19 but my nan told me about how annoying it is that the test is effectively voided if you don’t use the loo once a day (some of us go a few times a week, it’s normal to be this way). As the article says, providing one day’s worth instead of multiple days would be easier for people.

Elizabeth July 2, 2015

I can understand a reluctance to take part in the testing procedure for bowel cancer. I have been invited several times and always call to politely decline. The sending in of a sample is okay, but if called back if there is a query, there is a chance of a further invitation for a colonoscopy. In the explanatory leaflet, we learn that there could be cases of cancer that are missed, that the tests are not completely accurate etc. etc. It is important for individual patients to be aware of their own body and if there is any problem to seek medical advice. Hopefully they will get an accurate diagnosis, but this doesn’t always happen and this is what worries people. The worried well will always go for all the tests they are invited for.

Bob Lang July 2, 2015

I think the major problem with take up of bowel screening is the useless suggestions for collecting the samples that accompany the kit. Many people, faced with doing something particularly gross and given advice that is completely unworkable decide to give up – and who can blame them?
I received my kit a few days after my 60th birthday, and I was completely stumped on how to collect the samples, particularly since the sample must not contact water or urine, which is tricky for someone who’s had a radical prostatectomy. The kit lay unused for several months until I suddenly had an idea on how to do it. Luckily, my idea worked and I was able to return the kit.
As it turned out, this first result was “unclear” so I had to do it two more times, putting my idea into practice 6 times! Fortunately, these follow up samples were all clear.

Mrs Barbara Gibson July 2, 2015

I have taken this bowel test for quite a few years in the comfort of my own home. It is easy to use and could safe your life, what is more important? We are so lucky that these tests are available to us please, please use it, your life is more important than a few minutes of providing a sample.

mportant

ethna smith July 2, 2015

easy test , done mine, came back okay ,thank god . this simple test can save lives

Purnima Mehta July 2, 2015

I think the instuction is not easy to understand. My English is very good but I found it difficult to understand. People who’s first language is not English, they should provided leaflet in their mother tongue. When you send first letter, you should ask them to call on certain number if, they need translation in other language. I worked for NHS and also Interpreter.

peter j gardner July 2, 2015

no link to send for a kit!

Nancy Gillon July 2, 2015

I do think everyone who gets a test through the post should do it. My husband got one last October and was found to have bowel cancer and he had his operation last November and chemo in January. I’m convinced early diagnosis saved his life.