|Sam Bearfoot, who blogs and broadcasts on UK Health Radio as The Digestion Detective, wrote last week to say how much she enjoyed The IBS Network’s 25th Anniversary Event, ‘IBS, the Patients’ Perspective’, but added that ‘there were a couple of shockers, even to me’. Dr Anton Emmanuel, consultant neuro-gastroenterologist at University College Hospital, London, confirmed that not all gastroenterologists are specialists in IBS and apologised on behalf of his colleagues for not always being able to manage it well, while Professor Peter Whorwell, who is about to retire from The University Hospital of South Manchester, told how his position in Gastroenterology had been advertised many times without a single applicant. It would seem that IBS is an illness that very few gastroenterologists want to specialise in. Although The Digestion Detective complimented their honesty and transparency, she was disheartened to knowing that even the experts feel that they might let patients with IBS down.
So what’s new? If I had a pound for all the people who had told me that their doctor does not understand IBS, I could go on a very nice holiday. But it’s not necessarily the doctors that are to blame. Most doctors I know are compassionate and caring and try to do their best for their patients within the limitations imposed by their practice. It’s the system that lets people down.
A System under Strain
Although successive governments have ring-fenced funding for the NHS, we hear all the time about how much the service is struggling to cope with increased demand and limited resources. How can it do all that might be done when there are ever increasing numbers of ill people coming through the revolving doors needing urgent diagnosis and treatment? An effective health system has to focus on priorities that make the most economic sense to the managers that run it. These include life threatening illness, urgent operations, outbreaks of infection, severe trauma, and diseases that can be diagnosed with confidence and treated specifically. It is a testament to the efficiency of the system and the dedication of many who work in it, that the system works so well for those categories of illness, but it is by no means the wrap-around, total care system ‘from cradle to grave’ that the architects of the NHS envisaged.
An illness that doesn’t fit the model
Specifically, the system fails the millions of people with illnesses that defy positive diagnosis and effective treatment; the illnesses like IBS and the people like you. IBS was coined by a committee of medical experts and in practice, is diagnosed by what it is not. The symptoms of IBS are the same as any disease that affects the bowels. Tests can only screen out other diseases. No specific test has yet been established for IBS. Similarly, despite frequent reports of breakthroughs, doctors are still no nearer to a concensus regarding a definitive cause; instead research suggests a ever increasing association of abnormalities in gut immunology, permeability, motility, sensitivity, the colonic microbiome and the emotional centres of the brain. This suggests not so much a specific cause as a resetting of the brain gut axis that may be instigated by a variety of factors. Equally there is no universally effective treatment, though many treatments can be effective for some of the people some of the time. Probiotics, low FODMAP diets, antispasmodics, fibre, mindfulness meditation, hypnotherapy can all help. The magic statistic in most surveys is about 80%, but can that be true for every treatment? And if it is, what does that mean?
So it seems that what we all call IBS is an individual condition, influenced by a whole variety of factors (life events, diet, lifestyle, life experience, context, medications, sleep, exercise) and associated with a range of symptoms and unexplained illness affecting other bodily systems (chronic fatigue syndrome, fibromyalgia, functional dyspepsia, headaches, etc). If that is the case, then how can you expect a doctor, who does not know you, to sort it all out in eight minutes. The best any medic or other health care professional can do is to listen, explain and help you find the medication, therapy, diet or life style solution that is right for you. This requires a different attitude and skill set and a different system.
Medicine stuck in the last century
Medical practice has remained stuck in an empirical model based on the discoveries of the last century – a pill for every ill – make a definitive diagnosis, apply the specific treatment and witness the cure. This approach does not work for most ‘ailments’, yet people have been conditioned to expect it and doctors trained to deliver it. Perhaps in the future, enough ‘specific’ causes of IBS will be discovered to split off specific conditions that conform to the medical model, but the signs are not promising. Instead, the signs are that long term unexplained illness like IBS requires a paradigm shift; a mode of practice that understands the illness narrative and informs and guides people to discover their own solutions while retaining the technological miracles for those who clearly need them.
Not all bad news.
But it’s not all bad news. People do get better; some by some major life change; others by discovering what works for them. My impression from ‘IBS, The Patients’ Perspective’, was that the people, who got over their IBS, found their own way, helped and guided by but never dependent upon trusted health care professionals. This is what would make a difference. Isn’t it better to have an illness that you can understand and control, guided by health care professionals than to suffer from an ‘unknown’ disease that makes you dependent upon doctors, who cannot know you well enough to understand the vagaries of your illness?
The Good News.
Guided Self Help is the good news for IBS; reliable, independent information that allows you to understand your IBS. In the model proposed by The IBS Network, health care professionals and expert patients could be trained to facilitate self help either individually or in a group setting and a national network of self help groups could be constituted to provide the basis for advice and support. Go to the brand new IBS Network website to find out more about how we can all make a difference. Look up the pages on Self Help Groups and Campaigns. Sign the Change petition ‘It’s not just IBS’, which campaigns for greater awareness and training for doctors and other health care professionals.
If more health care professionals could engage with the fascinating challenge of faciIitating self management of IBS, it could make a big difference.