Reasons for help seeking
Four main themes related to why people had sought help for their symptom:
Symptom characteristics
The most common reason given for seeking help was that the symptom did not go away and was, therefore, appraised as unresolved:
‘I thought, well, it could just be a short-term glitch in regularity, in normality. But then when it continued for day after day after day, I came to the conclusion that there’s something going on here.’
(P33, male, persistent change in bowel habits)
Persistence, combined with other symptom characteristics such as being ‘out of the ordinary’ (P10, male, persistent cough) or very different from anything experienced before — ‘it was a very different stomach pain to what I’d ever had before’ (P23, female, persistent unexplained stomach pain) — yielded the help-seeking decision. However, the definition of ‘persistent’ varied, with people referring to durations of days, weeks, months, or even years before contacting the GP:
‘When it wasn’t getting any better, I think I mentioned it to the GP, yeah, but it could have taken me 2 years to get to that point.’
(P9, male, non-healing sore)
Instinct
There was evidence for the influence of instinct or ‘gut feeling’ — ‘you just know’ (P31, male, persistent cough) — when something was not right with the body and it was time to seek help. In these cases, the sense that something was not right was immediate and a decision was made to seek help. This was observed for ‘obvious’ symptoms such as unexplained bleeding:
‘But this slight bleeding from the bum was … I think it was an instinctive thing. I just instinctively knew that something was not quite right.’
(P39, female, unexplained rectal bleeding)
‘You know when you just feel in your water that it isn’t right, and that’s how I felt. So I thought if it’s not right, best I go and sort it out.’
(P18, female, unexplained vaginal bleeding)
Social influence
People mentioned that they were encouraged to seek help by someone else, such as their spouse or friend. Sometimes this was based on advice seeking:
‘Well, I don’t think I spoke to anybody else at all about it other than my wife. She is very … I lean on her for medical guidance and advice on, pretty well, everything.’
(P33, male, persistent change in bowel habits)
In other cases, the symptom had become apparent to others. Symptoms in this category were becoming more visible over time and this, in combination with sanctioning from peers, triggered help seeking:
‘But then it progressed so that I was coughing during the day and then it even progressed more that it was actually waking me up during the night. And, again, the wife was saying “you’ve got to go and get this sorted out”.’
(P32, male, persistent cough)
‘And then eventually it’s getting bigger and bigger. A few people sort of looked at it and said, “No you need to go and get that …” So I registered with a GP. But I should have actually probably got it seen to a lot earlier than I did.’
(P3, male, change in the appearance of a mole)
Awareness/fear of possible link with cancer
Associating symptoms with cancer was a consistent help-seeking trigger. Several people mentioned that seeing a cancer-awareness campaign prompted them to seek help from their doctor. This was sometimes because the campaign alerted them to their symptom being related to cancer, and sometimes because it provided a ‘nudge’ or endorsement that they should seek help for their symptom:
‘Well, it’s probably a bit longer than 3 months but I had irregular bowel movements. Occasionally, there were signs of blood and, at the time, there was a TV or a radio advertising campaign that if you have these sorts of symptoms you should go to the doctors. And that’s really … I was putting two and two together, that’s why I went to the doctors.’
(P32, male, unexplained rectal bleeding, persistent change in bowel habits)
Despite framing the interviews within the context of general questions about health and not mentioning cancer, a number of people spontaneously mentioned fear that the symptom might be due to cancer as a trigger for help seeking:
‘But always at the back of your mind you’ve always got the fear of cancer, that’s all really, just at the back of my mind I think it might be, well it’s best to check just in case, sort of thing. I always have an innate fear of cancer.’
(P6, male, unexplained throat lump)
However, avoidance of the word ‘cancer’ was also apparent, with people describing it as ‘the big C’ (P15, female, persistent difficulty swallowing, change in bladder/bowel habits) and the ‘bogeyman’ (P27, male, unexplained lump on forehead, persistent change in bowel habits). Some people seemed to find it difficult to explain their fear, describing it as something ‘innate’. As P6 (male, persistent cough, unexplained throat lump, change in bowel habits) commented:
‘It’s like fear of the dark or fear of anything, really, fear of psychopaths, you know, it’s just there.’
Despite this reluctance to seek help, the fear that the symptom could be due to cancer was also a motivator to do so:
‘Well, because my partner’s ex-wife died as well, about 18 months after him, and she had a lot of the different symptoms — reflux, bowel, whatever, and it turned out that she had cancer on the liver and in various other places. So if you are not of a medical background and you don’t watch medical programmes, you are very ignorant and so that made me think “oh gosh, I should get that checked out”.’
(P15, female, persistent difficulty swallowing, persistent change in bladder/bowel habits)
Reasons for not seeking help
Five main themes emerged:
belief symptom is trivial/normalising symptoms;
stoicism;
fear;
worry about wasting doctor’s time; and
lack of confidence in the healthcare system.
These were categorised as person or GP factors (Box 1).
Belief symptom is trivial/normalising symptoms
For those not contacting their GP about their symptoms, the most common reason was that the symptom was trivial and they did not appraise it as needing medical attention. Painless or intermittent symptoms were often in this category. A man with intermittent diarrhoea (sometimes four or five times a day) said:
‘I just didn’t think it was important enough to mention.’
(P6, male, persistent change in bowel habits)
A woman reporting persistent, unexplained abdominal pain, but who had not followed up on her referral for diagnostic tests, gave the following explanation:
‘At times I thought it was bad … but when it kind of fades away, you know, it doesn’t seem worth pursuing really.’
(P43, female, persistent, unexplained abdominal pain)
Persistence played a complex role in help seeking, even though it was often a trigger. Symptoms that had been present for several years could also result in the person feeling they had always been prone to the issue and their symptoms were, therefore, ‘normal’:
‘Well, I, kind of, always have … all my life, I go to the toilet fairly often anyway. In the night time when I go to bed, I have to get up about seven or eight times during the night having to go to the toilet.’
(P4, male, persistent change in bowel and bladder habits)
Across symptom types, attribution to ‘normal’ processes such as ‘getting older’ (P24, F, persistent, unexplained lower-back pain) also deterred help seeking:
‘I just thought it was an ageing process.’
(P9, male, sore that does not heal)
‘It’s just age; it’s nothing.’
(P36, female, unexplained breast lump)
Stoicism
Another theme that emerged was the feeling that individuals should ‘just tolerate it’ (P37, female, change in the appearance of a mole, unexplained lump on abdomen). People wanted to distance themselves from being ‘the sort of person who goes running to the doctor’ (P22, female, change in the appearance of a mole), as though this was a sign of weakness:
‘You’ve just got to get on with it. And if you go to the doctor too much, it’s seen as a sign of weakness or that you are not strong enough to manage things on your own.’
(P35, male, persistent change in bladder habits).
An alarming feature of this ‘stiff upper lip’ (P15, female, change in bowel/bladder habits, persistent difficulty swallowing), was the extent to which people put up with debilitating symptoms. One man reported a recent worsening in bowel symptoms and, although he had previously been to the doctor about it, he had not informed the GP that it had been getting worse over the past 3 months, deciding instead to manage it himself:
‘When I’m very tired, I literally have to let it go and not get up. So that’s what I do and that really helps me. It’s just a technical way of dealing with it.’
(P45, male, persistent change in bowel habits)
Fear
Although fear that the symptom might be cancer was most often a determinant of help seeking, it could also be a barrier if the person had a particular dread of:
getting a cancer diagnosis;
follow-up investigations; or
the impact on daily life.
As one responder, commented:
‘You don’t want to be told you’ve got something that’s awful.’
(P24, female, persistent, unexplained lower back pain)
A woman (P20), who was experiencing a persistent change in bladder habits and ‘can feel myself wetting myself’ but had not been to her GP, admitted:
‘I’m frightened. Because I don’t go very often — I don’t like going to talk about things ... Because one year, a couple of years ago, I had so many operations, I just don’t want to any more.’
Another woman, who was experiencing abdominal pain but had not sought medical advice, was concerned about the potential impact on her life and family:
‘I would have anxieties but, I suppose, in the scheme of things, everybody must have those anxieties, you know. How is everyday life going to be managed if you have to go and have something done and how is it going to affect the family?’
(P43, female, persistent, unexplained pain)
Worry about wasting the doctor’s time
A dominant reason for not going to the GP was not wanting to be perceived as wasting the doctor’s time; this was, in some cases, linked to the themes of ‘believing the symptom is trivial’ and patients should ‘just tolerate it’. However, this seemed to be more to do with self-identity than rationing their access to health care: people wanted to identify themselves as someone who used health care only when it was absolutely necessary. They referred to people who go ‘every day or every other day for some menial thing’ (P20, female, persistent difficulty swallowing), and did not want to be like them:
‘I feel like they are going to go, “For goodness’ sake, why would you come to me with a silly thing like that?” And they really don’t but then I don’t ever go for anything that’s that silly. I tend to only go when I’ve got something worth wasting his time for, if you know what I mean.’
(P18, female, unexplained rectal bleeding)
One way of dealing with this concern was not to seek help for the particular symptom but to wait for another reason for going to the doctor:
‘I mentioned it when I was seeing him about something else.’
(P6, male, persistent cough, unexplained throat lump, persistent change in bowel habits)
Lack of confidence in the healthcare system
As well as concerns about the implications of weakness, implied by burdening the GP and timewasting, there was also evidence of negative attitudes towards the healthcare system. Difficulty making an appointment or feeling restricted during the appointment were raised as reasons for not seeking help:
‘I did actually go and say to the doctors once, “you need to be dead to get an appointment here” and he said “even that doesn’t guarantee you are going to get one.”’
(P32, male, unexplained rectal bleeding, persistent change in bowel habits)
‘I think I’ve just grown disillusioned that when they look at you, they’ve got a limited time so they don’t have time to do a thorough investigation.’
(P35, male, persistent change in bladder habits, persistent, unexplained bladder pain)
People also wanted to be able to access the same GP to discuss unresolved symptoms and ensure continuity of care:
‘Your GP is like the father confessor, for those who believe in God, or, you know, the lawyer, and I’ve had the same lawyer for the last, well, 1984 and 1985, whatever. I don’t want to change.’
(P45, female, persistent change in bowel habits)
There was also a lack of confidence in what the doctor could provide in terms of ability to diagnose or treat illnesses:
‘I just feel they can’t do much. They’ve run out of their capacity to offer something.’
(P35, male, persistent change in bladder habits, persistent, unexplained bladder pain)
‘I don’t have an awful lot of faith, if it was something serious, that it would be picked up.’
(P24, female, persistent, unexplained lower back pain)
Perceived difficulties with appointments, lack of continuity of care, and lack of confidence in the GP resulted in people taking alternative action, for example seeking help from their local pharmacy or accident and emergency department:
‘It was very difficult to get to see the doctor. I think I had about a 2-week wait and I tried all the other things and it was getting no better and it was quite uncomfortable. So I asked in Sainsbury’s [pharmacy], I said something like, “I’ve tried this and I think I maybe have … but it’s doing no good, what can you recommend?”’
(P15, female, persistent change in bladder habits)
People also mentioned that they would rather access health care through an emergency route than visit their GP to:
‘... avoid waiting God knows how long for an appointment to see a specialist route. So, in that respect, I would bypass the GP, really’,
(P14, male, persistent cough).
