Bowel Screening
Why some were reluctant or did not take part
Many factors affect a person's decision whether or not to take part in screening for bowel cancer (also see Why people decided to take part in screening). In most countries, such as the USA, screening is not free, so cost probably deters many people. In the UK screening for bowel cancer is free.
People may be reluctant to take part in screening because they believe they are at low risk of developing the disease. One man we interviewed, for example, said he only took part in screening for bowel cancer because his wife insisted.
He did not believe that there could be anything wrong because he felt fit, members of his family were all well and he had healthy eating habits.
He did not believe that there could be anything wrong because he felt fit, members of his family were all well and he had healthy eating habits.
I undertook the screening simply because my wife said, 'We'll do this and we're in the right age group for this particular screening', which is the pilot scheme here. But I didn't feel it was necessary because we we're a fit family and our eating habits are what they regard as healthy eating now. You know, but we're used to having plenty of vegetables and fresh meat every day you know, so I didn't feel that there was anything wrong with me and I didn't think I'd caused any, any ill effects on myself. It was only just recent. It was just at, about that time that the children said I didn't look so good and that I didn't, I wasn't as strong as I used to be but I just put that down as an ageing process.
So it was good that you went ahead.
Yes it was very good.
Lack of time may also deter some people from taking part. In some countries people have to collect the test kit from their General Practitioner (GP) or from a local hospital. In the UK people receive their test kits by post, so lack of time is less likely to affect the initial decision to take part. However, the man mentioned above was reluctant to repeat the test, partly because he led a busy life.
He was reluctant to repeat the test because he had little time.
He was reluctant to repeat the test because he had little time.
As I said, I just thought, they've found someone they can, prolong the job with. You know I've sent it off and now they say it's positive. Of course probably what I was doing was disbelieving what they were saying to me or misreading probably. But I just felt that, 'Oh this is not for me. I can't be dealing with this going on like this'. Actually I thought it was going to go on for too long, you know. Because I'd got a busy life, I'd got things to do. I didn't want to keep having to spend a few minutes in the morning spreading faeces on little discs, you know. So it was quite an inconvenience more than anything really if I, if I sum it up.
But your wife persuaded you to send it off again?
Oh yes. She was quite insistent.
People had other reasons for being reluctant to take part in screening. Many said they found the idea of Faecal Occult Blood test procedure very unpleasant and this had at times put some people off doing the test, at least temporarily. Some finally rationalised that it was no worse than dealing with babies' nappies (Note that many people found the test easy - see 'Doing the Faecal Occult Blood test at home').
One woman had first decided not to take part because she found the idea of doing the test “pretty disgusting” (see 'Initial reaction to the invitation for screening'). A woman with arthritis was concerned about how she would manage to do the test.
She didn't do the Faecal Occult Blood test immediately because she thought it would be 'a little bit messy'.
She didn't do the Faecal Occult Blood test immediately because she thought it would be 'a little bit messy'.
And I think there was a time, you hadn't got to do it right away, you could leave it a few weeks, but it had got to be done within a certain time. And I thought well if every time I open the drawer, it's going to be at least once a day, I'm going to see it, and I thought, “Oh, I might as well do it. At least there's nothing wrong with my health”, never thinking, probably there might be something wrong. Because I hadn't had any symptoms at all. Nothing at all.
What put you off doing it?
Just because I thought it was a little bit messy.
That's what it was really. A little bit messy. But it was, because it was just the thought of the messing, just messing. Although you have babies, and you move whatever, sort of thing, you just think, “Oh I can't be bothered with this.” But I decided to do it, and in a way I'm glad I did, because they did say, [the nurse] said, in six months after we knew the results, in six months if I hadn't have done it, it could have been a lot worse. And I would have had to have had follow up treatment, so I think I've been very lucky actually.
Even once they had decided to be screened some delayed doing the Faecal Occult Blood test for various reasons. One woman worried that the doctors might find a problem and did not like the idea of a colonoscopy. She also worried about putting her stool samples in the post, saying she would feel “devastated” if the postman opened the sample card. A man questioned how hygienic it was to send samples in the post.
Others delayed because they felt well when they received the invitation for screening and at first felt they did not want to know if anything was wrong. One woman said that even when she was invited for breast or cervical screening she argued the pros and cons with herself before attending.
Her initial attitude was, 'If you don't know, you don't worry'.
Her initial attitude was, 'If you don't know, you don't worry'.
Right back at the beginning with the pilot study, did you wonder what the pilot study was, or was it all quite clear to you?
Well I thought, I thought actually, I did think it was a good idea, having, as I say, worked with clients that are like that, I did think maybe this is a good idea. But then when you're set with the task of actually, 'Should I do it?' In black and white; 'Should I do it or shouldn't I do it?' You think, 'Mm, I don't know if I want to do it.'
What put you off the most, what different factors made you [delay]?
I think, I think the thing that put me off most was, if there was anything wrong.
I mean, I suppose its like really, which is silly, if you don't know, you don't worry.
What you don't know you don't think about do you?
So it wasn't the actual doing the test?
Oh no, no. No, it wasn't that, it wasn't that at all, it was the thought that, well I'm alright.
Which luckily was right the first two times, I was.
But I think, I think that was it, more than, more than anything.
Some people had been invited to be screened but had declined. They explained that they were not put off by the idea of handing the samples - indeed one woman had worked as a carer and another as a nurse. One said that she liked the information leaflet that arrived with the initial invitation for screening and at first had intended to take part, but she had found the instructions that came with the Faecal Occult Blood test kit unclear. She did not realise that she had 14 days to produce the 3 samples and said that if she had been asked for a one-off sample she would have done it 'straight away.'
Explains why she did not do the test - mainly because she thought she had to take stool samples on three consecutive days.
Explains why she did not do the test - mainly because she thought she had to take stool samples on three consecutive days.
Can you remember what was most important in the information that swayed your decision?
Well nothing in the [initial] information. That was all very straight forward. It was just the actual doing of it; actually doing the test itself that completely put me off.
Which aspect of actually doing it was the, put you off the most?
I think it was the actual having to take the, the faeces at different times. I just couldn't get my head round to doing that.
I think if it could be made simpler.
And easier and if you could do it in one go then I think I would consider it. But having to do the three and all that, it just really, I just didn't um'
Was it the thought of actually having to handle faeces?
No, no because I've done that in my career as a carer, no it was just the time element and how you had to go about it and, and if it had just been one, a one off then may be I would have considered it, but it was just the time, it was just having to do the three, that really, that really, it was off-putting for me. I just, I would have just like to have gone to the bathroom, done what I'd got to do, posted it off and be done with it instead of having to keep going back.
Did the information book make it clear why they asked you to do it three times?
Well yes because of course the different; you know passing the different faeces obviously can give different, different readings. That is the only thing I can say I found it a bit complicated.
Did the information make it sound complicated?
Yes, yes actually it did.
I wonder how we could make it a bit simpler. Would you have found it easier if you'd had to go to the GP and had the nurse help you do it?
Yes.
And might you have done it if they'd sent you to the GPs?
Yes, yes most definitely. It was just I found it very, as I say I found it complicated, and these different slots that you'd got to put it, nothing at all to do with doing the, with the faeces, nothing at all, it was just how I'd got to do it.
Please could you explain what was most difficult for you and what was most confusing?
The time element, I didn't know whether once I did it, with taking my first sample I, I didn't know whether I'd got to take my next sample the next day and the last sample the following day or, it didn't seem to explain properly. I didn't realise until I was being interviewed and it was pointed out that I'd got fourteen days from opening the sample that I'd got fourteen days to do it when it was convenient to myself. I thought it had got to be 1, 2, 3 right off. Now I know, and it's been explained and I can understand, I'm willing to do it because I know that I haven't got to force it within, I've got fourteen days. So it can be done at my convenience and when it's suitable for me, as long as it's within those fourteen days. Before I thought I'd got to do, and it isn't everyone that [laughs] that can do it three consecutive days. And I find now you've explained this to me that I feel more at ease with it.
A retired nurse had also decided against screening. She thought she should take part and even had a friend who had survived bowel cancer after finally attending screening after three invitations. In the past she had delayed having cervical smears, and had developed cervical cancer, so understood the advantages of an early diagnosis. Her main reason was that she had once had an endoscopy for gastric problems, which she described as “the worst experience”, so she was afraid of other investigations, such as colonoscopy. She knew that it was possible to have an anaesthetic or a sedative during a colonoscopy but said she reacted badly to both sedation and anaesthetic.
She decided against taking part because had reacted badly to sedatives and anaesthetics and feared investigations such as colonoscopy.
She decided against taking part because had reacted badly to sedatives and anaesthetics and feared investigations such as colonoscopy.
Please can you tell me your story in relation to screening for bowel cancer with as much detail as possible?
Well I'd been invited twice and I've received the package at home, you know from the local hospital, NHS trust and on both occasions I've just disposed of it and not sent it back. I suppose you'd just call me 'chicken'. I don't really want to know, you know at that time. Maybe in the future if I was invited I might do it again but at, on both occasions I, I just don't want to know. I couldn't cope with knowing that you know if they sent for me again and said it was inconclusive or I'd definitely got cancer of the bowel you know I'd just be paranoid and thinking about surgery and treatment and investigations. One of the things that does put me off is the thought of having a sigmoidoscopy. It actually, you know it just feels me with horror. I've had an endoscopy and it took the doctor two years to persuade me to have that done for gastric problems and even being an ex nurse they tell you you're going to swallow this tiny flexible tube, you know it's not a tiny flexible tube at all, and it's the worst experience I've really had so I just couldn't even tolerate the thought of having a sigmoidoscopy.
Or a colonoscopy?
Or a colonoscopy, no, no, no not at all, it's, it just fills me horror. And that is, that is the two reasons you know I'm just a coward I think. So may be, may be in the future if I was invited again I might think about it. But I would be just praying that it would be totally clear, that I wouldn't have to have further investigations, I think that's what bothers me.
Can some people have the choice of having a sedative if they want to?
Yes mm.
So even if you, even knowing that you could possibly have a sedative.
Mm.
You still didn't want to go ahead because of the investigation?
No, mm, mm. And when I had my endoscopy I didn't have a sedative.
Could you have done?
Oh I could have done but I didn't fancy.
Are you not keen on investigations?
No [laughs].
Even with a sedative?
Yes.
Why don't you like having sedatives?
Because I don't react very well.
Oh.
Mm, mm. I had a minor operation recently but I chose to have a spinal, I don't react very well to sedatives and anaesthetics. You know I feel really, really yuck and horrible for days, not just hours. So I put up with the endoscopy without a sedative but.
So your greatest worry was that if it came back that there was a problem.
Mm.
You would have to have further investigations such as a colonoscopy?
Yeah mm, mm.
And you wouldn't want to have a sedative and therefore you were worried about the discomfort?
Mm.
Yes I can understand that. In spite of the fact, well because you were a nurse you remembered what people had been through.
Yes that's right and then on the other hand
A man who had decided not to participate said that he understood the importance of screening and even wondered if it might help to make it compulsory, with a fine for non-attendees.
He decided not to do the test partly because of his past experience of colonoscopy, which he had found embarrassing, undignified, and depressing, and partly because he had seen a friend die of bowel cancer after a series of operations. That experience, and his brother's recent death from cancer, had made him pessimistic about treatment, and he did not want to dwell on cancer (note that most people we talked to found the colonoscopy less uncomfortable than they expected- see 'Having a colonoscopy and treatment during it').
Last reviewed May 2016.
Last updated May 2016.
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