People's views of the initial 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.
Well I just felt it was self explanatory, there was, it was covered, everything I needed to know I think really so I didn't see any problems with that either at all because you know the information was there, adequate for what I wanted. I wasn't looking for details. So the basics were there and that was adequate for as far as I was concerned.
The leaflet is brilliant. It tells you what the test is all about.
Very good, very good they, they tell you roughly what it is and what it's about and the pamphlet what you get with it it's brilliant you know people should read it and they'll know.
Was that about the right amount of information or would you have liked more or less?
No I think that, what they send you in the pamphlet comes right to the point and they just tell you know and what they test is all about.
The information was very enlightening.
And the letter came I think with an information booklet about the screening programme.
What did you make of that information that came with it?
It was very enlightening you know and as I said I straight away thought of my father and my grandfather, who had this problem, or my grandfather had this problem and I thought the information pack was absolutely brilliant, you know it opened you up to everything about bowel cancer and the goods of having the screening done and well I can't think of anything else.
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.
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...
It was absolutely brilliant. Anything and everything that I could have thought of to ask about, and other things, were answered, you know, all the questions, all the queries, why, what, where, when, how, percentages. Very important. In fact, if I might move off that briefly, even when my first test came back unclear, the very next words were, 'This does not mean you've got cancer.' And I thought that was absolutely brilliant, and so important to say, 'Hey, hang on a minute, you know that's just one of these things'. It could, but it doesn't mean you've got cancer. Wonderful. And it was also well explained in the booklets as well. Couldn't go wrong.
I think in the booklet it mentions the colonoscopy. Do you think it is a good thing or a bad thing that they mention the colonoscopy in that initial booklet?
I think it's good. I think you need to know the ultimate outcome of what might happen to you. It could be that you have a clear test and that'll be the end of it. But you need to know well if it's not clear, if they think I need to, what is next along the line. What ultimately is going to happen? So I knew, you know, and I thought that important.
So the amount of information was about right?
It was indeed.
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.
No not at all I just, I felt that I, I felt, I mean I know cancer is a killer and it would be better if I had cancer to discover it early and from the literature it was quite clear that if it was picked up early you had a very good chance of survival. I felt better to do something about it rather than to do nothing about it.
Did you read the information booklet that came with the letter?
Yes sure I did yes.
And what did you make of all that?
Well I found it a bit repetitive but I was quite clear what it meant and what I, what the advantages and disadvantages were. Like everything the unknown; it was enough to convince me it was worth doing and therefore I went ahead with it.
The leaflet explained that things could go wrong during colonoscopy and that the doctor could...
Can you remember anything about it?
They just showed you diagrams of the, of the bowel and what would go on like you know with, if you'd got any problems in your bowel, it told you all about that. And they said what a, you know a good idea to have it done and have it checked out. So I did.
Did it tell you anything about any disadvantages there might be in having it done?
Yes it did, it told you about things that could go wrong you know and they could puncture your what's it inside your.
The bowel and you know you could be in some trouble then. But I mean I think they could do it all alright in my hospital so yeah.
So that didn't worry you?
No it didn't. I thought they was quite capable of doing it without injuring your inside anyhow so I wasn't really worried about it at all.
Did you look for any more information elsewhere or was the information booklet enough?
No I thought it was good, very much information, information in the booklet it was very good.
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...
Yes, there is a booklet comes with it explaining everything that would happen.
What did you think of the information that came with it?
It was very good actually, it was you know quite good, it was really good, telling me everything about bowel cancer really.
I think in the information sheet it gives you quite a lot of detail about what might happen if they found you had an abnormal result, I think it mentions that you might be offered a colonoscopy.
That's right yes.
And I think it goes into a bit of detail about that and even about the possible tiny risk there might be of having a colonoscopy. Was that about the right amount of information or would you have liked less or more at that stage, right back at the beginning?
I don't think I would have liked more, it would've frightened me if I'd have had more information but you know to say that you would go in for a colonoscopy and you would told that would, personally for me that would be about the right amount of information I would want at that time. And then if it was anything more the doctors would inform me then, once you'd had your colonoscopy.
So you think you had about the right amount, the information was about right?
Yes I do, I do the information was about right.
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...
I think for a lay person, you know I knew what they were talking about, but for a lay person it sounded very simple, very, not painful, very easy, you know something like, 'Oh you just pop in in your lunch break and, and get it done.' And I think that might give a false impression to people, and they, they would have it done. If it was very uncomfortable, painful or you know they found it too horrible for words I think that might stop them going back. Whereas if you go prepared, the fact now this is going to be pretty horrible, and even if they exaggerate a bit, surely it's, you know it's better to expect that than to expect something that's practically you know, just nothing. So yes I do think that the letter could have been a bit more, you know, definite.
A bit more detail about it, the colonoscopy or'
Yes not so sort of trying to gloss over it so that people would go and give you the impression it's nothing.
Someone else pointed out that the information leaflets include useful phone numbers.
Last reviewed May 2016.
Last updated May 2016.