‘I don’t think my doctor understands IBS. The pills, he has prescribed, never seem to work and make some symptoms worse. He has referred me to a gastroenterologist, who lost interest after another negative colonoscopy. He next referred me to a dietitian, but after a six months wait, the diet she recommended was so restrictive, I could hardly eat a thing. He then told me it is all in my mind and referred me to a psychologist, but the waiting list was 18 months. I have been on this merry go round of health professionals for two years. And in all that time, my symptoms have got worse. When I saw him last week, he said that I must learn to manage it myself!!!’
How many of you have had a similar experience? At The IBS Network’s conference on Self Management, which took place at Sheffield’s Hallam University last weekend, most of the delegates had been on the merry-go-round of referrals several times before arriving at some solution that seemed to work at least some of the time. Among the speakers were three gastroenterologists. Although each was an expert on IBS, they acknowledged that they did not have the answer. As Professor Peter Whorwell commented, most GPs are not interested in IBS. They do not regard it as a real illness; more a trivial psychological condition. Although IBS comprises about 15% of all referrals to gastroenterology clinics, most gastroenterologists regard their role to exclude severe illness. There is no diagnostic test for IBS and no specific treatment, though some treatments may work for some patients some of the time. It is therefore hardly surprising that few gastroenterologists follow up their IBS patients.
Is there a better way? Some years ago, I was strolling across the car park at the Royal College of Physicians in Regent’s Park, ruminating on the frustrations of irritable bowels, when my colleague, the gastroenterologist Dr Robert Logan, suddenly cried, ‘Nick, I’ve got it; Digestive Health Practitioners!’ He went on to explain that health care professionals from a variety of modalities (nurses, GPs, dietitians, counsellors, hypnotherapists, complementary health practitioners and even perhaps ‘expert patients’) should be trained to offer first line holistic management for IBS. This would not only save the health service time and money but also streamline the management of IBS by creating a ‘one-stop shop’.
With so many possible factors to consider, properly trained Digestive Health Practitioners (DHP) could best provide a consistent, dedicated comprehensive service for IBS. They would, for example, be trained to listen ‘actively’ to the patient’s story and not only elicit the medical presentation and social context of the condition but to recognise ‘red flag’ symptoms that might suggest other diseases. They could also make relevant enquires about the patient’s diet, lifestyle and life history, suggest over-the-counter medications, offer advice on low FODMAP diet for diarrhoea and bloating or a high fibre diet for constipation, indicate ways to rectify sleep patterns and manage stress at work or within relationships.
Robert was keen to interest the major professional organisations, but soon encountered entrenched protectionism – only trained dietitians could deliver a low FODMAP diet; only psychologists could deliver cognitive behavioural therapy, only GPs diagnose IBS. So we decided that a limited bottom-up approach, organised by The IBS Network, might be the way to gather sufficient data and experience to justify to consider a much more extensive roll-out.
The plan was for The IBS Network to organise courses to train leaders to facilitate approved first-line comprehensive management for IBS to self help groups nationwide. The first phase: writing the web-based self management programme as a comprehensive information resource, was completed with no additional funding in 2015. The second phase: to expand the existing IBS Self Help Groups throughout the country and to train group leaders to deliver holistic advice for IBS, is ongoing. So far, 19 ‘leaders’ have attended training days, but there are only 8 self help groups.
Of course, such a radical proposal would have to be carefully regulated. Digestive Health Practitioners would not only need an approved training and testing, they would also require regular supervision. The logistics might be a nightmare, but with increasing pressure on both general practice and gastroenterology services, and the dissatisfaction of IBS patients with the existing health care system, the time has come to think ‘outside the box’, perhaps by applying for a modest development grant to establish the concept. To stand the greatest chance of success, the initiative would be driven by the needs of patients with IBS, but supported by health care professionals.
Although I retired from The IBS Network in December 2015 and am no longer in a position to influence policy, I know that The IBS Network is keen to encourage more people with IBS was well as health care professionals to become members of the charity and consider being trained to run their own self help groups.