People’s views of the initial bowel screening information leaflet

All those invited to be screened receive written information about the NHS Bowel Cancer Screening Programme: an explanatory letter and an accompanying information leaflet. People who have an abnormal test result get another information leaflet detailing the benefits and risks of the colonoscopy investigation, along with their results letter and an appointment with a specialist nurse practitioner to discuss the procedure. (See Talking to specialist practitioners about results.)

Some people had been screened some time ago and remembered little about the information they had received at the time. But almost all who remembered the initial information leaflets spoke very highly of them. People said that the information was in plain English, easy to understand and covered everything they needed to know.

The information was adequate for his needs.

Age at interview 67

Gender Male

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The leaflet is brilliant. It tells you what the test is all about.

Age at interview 68

Gender Male

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The information was very enlightening.

Age at interview 61

Gender Male

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The initial information leaflets (and the letters people receive when they get their results), include a list of the symptoms people might notice if they have bowel cancer, which some people didn’t know about.

Was surprised to read about the symptoms of bowel cancer in the leaflet.

Age at interview 65

Gender Male

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A man who had an unclear test result followed by a normal result and then an abnormal result was most impressed with the information provided:

He was glad to read that an unclear or abnormal FOB test result does not necessarily mean a…

Age at interview 65

Gender Male

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One man found all the information a bit repetitive, but the leaflet clearly set out the advantages and disadvantages of doing the test and the information convinced him to be screened. Another man recalled diagrams of the bowel in the leaflet and the clear information that screening involves risks.

The information leaflet convinced him that screening was worth doing.

Age at interview 65

Gender Male

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The leaflet explained that things could go wrong during colonoscopy and that the doctor could…

Age at interview 65

Gender Male

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One woman who thought the amount of information was OK said, “I’m the sort of person the more information I have the more I get worried.” Another said that the amount of detail provided in the initial information was about right; she didn’t want more information about possible investigations.

Was happy with the amount of information in the booklet. Thought that more information would have…

Age at interview 57

Gender Female

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Not everyone felt the first booklet gave enough information. A woman who had an abnormal result would have liked more explanation about colonoscopy. A retired nurse also felt that the initial information leaflet should have said more about the experience of having a colonoscopy. Colonoscopy can cause some colicky pain but experiences are likely to differ according to whether or not anaesthesia or sedation is used and how people react to pain. Most of the people who had had a colonoscopy reported relatively little discomfort (see The colonoscopy procedure and treatment). It should be noted that this woman had had a similar investigation in the past, an endoscopy, without any sedation or anaesthetic.

She thinks that the letter and initial information leaflet should be more explicit about what…

Age at interview 67

Gender Female

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Someone else pointed out that the information leaflets include useful phone numbers.