This is what most of you told us. In a recent poll of 786 IBS patients commissioned by Almirall Pharma in association with The IBS Network and Core, less than half felt that their GPs were doing a good job in treating IBS. A third felt that their GP didn’t understand their condition. This impression was mirrored by a recent study which indicated that only 14% of GPs felt confident about making a positive diagnosis of IBS on symptoms alone, compared with 48% of community gastroenterologists and 72% of IBS specialists.
Information websites have now overtaken GPs as the most frequent source of information about IBS. Few patients in this survey never sought help from their doctor, but most waited for at least three months. Although 90% of people in this survey eventually received a formal diagnosis of IBS, diagnosis was often delayed by up to six months and in a quarter of patients even longer. But some are still sceptical.
As one young woman told us at a recent patient forum, ‘IBS is what they tell you when they don’t know what’s wrong.’
• Not only did GPs fail to take a full history, 40% of patients in this survey had not had an abdominal examination and only half of them had had a rectal examination.
• Coeliac disease was tested for in a third of the cohort, despite recent publicity that coeliac disease is 4 times as common in people initially diagnosed with IBS than in the normal population.
• But as many as 50% had been referred up to hospital for a negative colonoscopy. There was little follow up after the initial diagnosis.
• 40% of females and 32% of males never visited their GPs for help with their IBS and an additional 30% only visited once a year.
• According to the survey, 50% of you feel embarrassed discussing your symptoms with your doctor or nurse. Others worry they are wasting the doctor’s time. But some doctors seem to find time to listen and that can make all the difference.
‘My doctor listened to me and told me that I had to learn to help myself. He advised me to keep a food diary. It helped because I trusted him’.
• Pain was the commonest reasons for going to see the doctor and was experienced by most responders often several times a week.
• Diarrhoea was the commonest alteration in bowel habit, though a third of patients experienced both diarrhoea and constipation.
The results indicated that you were not necessarily worried by the possibility of an underlying serious disease; most of you accepted that stress and food intolerance were the prime causes of IBS, and often reported an interaction between the two.
‘Watching what I ate was a stress in itself. But when I gave up and stopped stressing, I was able to eat the same food and didn’t get any more symptoms.’
Despite that, most of you experienced a range of other symptoms associated with your IBS, not all in the gut. They included:
• urgency (67%)
• fatigue (57%)
• indigestion (48%)
• anxiety (44%)
• nausea (48%)
• irritable bladder (31%)
• depression (29%)
• muscle pain (28%)
• headaches (24%).
‘The abdominal pain makes me feel weak and dizzy and leaves me with a headache’.
Most patients in this survey recognised a link with stress.
Anxiety, embarrassment, stress and worry were the words most frequently used to describe emotional impact of IBS. Women scored more highly across all emotional domains, but often described how emotion seemed to bring on attacks of IBS.
‘I feel panicky if I’m left alone and that’s when my stomach seems to play up.’
You told us that your IBS impacted on several areas of your life.
• Over a quarter of responders reported that it stopped you going out or going on holiday
• A similar number said it had a detrimental effect on sexual intimacy and relationships.
• Irritability was a common complaint.
• 25% of you said you felt embarrassed at letting people down because of your IBS.
• Half of the people who responded to this survey said that they didn’t feel they could control their symptoms.
• Diet and better understanding of IBS were recorded as the commonest reasons for improvement.
• Medication was more equivocal although 45% of you felt that medication had improved their IBS to some extent.
We asked a GP to comment on these findings.
She told us that they have to juggle so many different functions these days and with an average appointment of just seven minutes, there was not enough time to understand what was going on in patients with IBS.
GPs saw their essential role as making sure that people are treated quickly and efficiently for potentially life threatening disease, and increasingly to establish preventive measures for at risk populations according to government directives. There is just no time to listen to every patient, who feels unwell.
'We have to employ our time economically and the government does not offer financial incentives for GPs to spend time managing IBS'. A similar situation occurs in hospitals. And, of course, she added with a wry expression, people who feel unwell with illnesses in which there is no clear medical treatment will always believe that their doctors have failed them.
So GPs are not inadequate doctors; far from it.
The vast majority are highly skilled and dedicated and show a high degree of care and compassion. It’s just that the ever increasing expectations for health care and the demands for disease prevention has created a system that may be failing people with unexplained illnesses like IBS. And there are no signs it is getting any better.
Giving GPs the budget to commission services may come to be seen as a cynical exercise in passing the buck and could lead to patchy health care, in which the patients themselves, private enterprise and charities are left to pick up the slack.
Health care, of course, is a political shuttlecock, batted back and forth by stakeholders and interest groups. So we might be forgiven for regarding GP commissioning a political sleight of hand in which government facilitates privatisation by the back door of the surgery while appearing to offer cash up front? But if that is the case, patient charities like The IBS Network will have an increasingly important role in creating authoritative information, advice and support to you and your health professionals so that you can gain the necessary understanding and confidence to manage your own illness and know where to seek the best help.
So help us help you better. Join The IBS Network today!
The team at The IBS Network would like to express their thanks to the 382 members who responded to this survey. The results provide important information to support, stimulate and direct our ongoing educational programme.
First published in FoodsMatter in November 2013; first published in Gut Reaction in March 2013
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