Quality Care for IBS: Are we any closer?
In April (IBS Awareness Month) 2015, The IBS Network of patients and health care professionals initiated a campaign for improvements in health care professional training and services that included the creation of an NHS recognised quality standard of care for IBS. See ‘It’s Not Just IBS’. On February 14th this year, NICE published its Quality Standard for IBS.
While I welcome this publication and the implicit acknowledgement of the importance of IBS self care that is implicit in it, I feel somewhat disappointed in the lack of specificity.
NICE Quality Standards were introduced in 2012 to define the priorities for improvement in management of specific illnesses. They support the British Government’s vision for a health and social care system that delivers the best possible outcomes for patients. Quality Standards are not targets; they are aspirations, which may or may not form the basis for incentives. As such, they influence the planning and delivery of services
The Quality Standard for IBS is designed to contribute to improvements in diagnosis, quality of life, satisfaction with care, unnecessary hospital attendances and inappropriate investigations. It includes the following recommendations:
- Tests for inflammatory markers should be offered as first‑line investigation to exclude inflammatory diseases of the bowel.
- A positive diagnosis of IBS should be made if no red flag indicators are present and investigations identify no other cause of symptoms.
- Advice on further dietary management if symptoms persist after patients have followed general lifestyle and dietary advice.
- Patients should agree their follow‑up with their healthcare professional.
The medical sociologist, Bryan Turner, once wrote that ‘Illness is a language, the body is representation and medicine is a political practice’. Each of the above statements seems to be a political compromise
The intention of the first statement is to reduce the need for colonoscopy to exclude Crohn’s Disease and Colitis. However inflammatory markers in blood samples (ESR, C-reactive protein) may be produced by inflammation anywhere in the body. A new test for Faecal Calprotectin measures an inflammatory marker released from white cells extruded from the inflamed bowel. So why is this statement not more specific? Is it because of a lack of clinical experience and confusion about the cut off that might indicate inflammatory bowel disease? If so, might this statement be a little premature? In contrast screening tests for coeliac disease, which is found in 4% of people with IBS, are well established, and should surely be included in this statement.
The second statement is contradictory. A diagnosis based on absence of red flag indicators (rectal bleeding, anaemia and weight loss) or tests for other common diseases is hardly ‘positive’. For most GPs, IBS remains quite correctly, a ‘diagnosis of exclusion’.
The third statement is vague. While it recognises that patients may find general diet and lifestyle changes helpful, it does not indicate what these might be or the individual nature of these. Moreover it completely omits any mention of changes in life situation, which may be more relevant. It also fails to state what further dietary advice might be helpful. If this statement hints at the low FODMAP diet, why does it not say so more clearly?
The fourth statement seems somewhat redundant. Patients are now much better informed and for some time, health care professionals have sought to explain and involve patients in decisions about their own care.
Taken together, I would regard them as ‘recommendations by committee’; a set of compromises that mean well but lack specificity and therefore, impact. Unfortunately, I cannot see that they are likely to alter medical practice or help patients.
The IBS Network works to empower patients with IBS to take control of their own illness and campaigns to improve medical training and services for IBS. So what might its members want to see the following included in a Quality Standard for IBS? The following are some suggestions:
- Access to specific screening tests for Inflammatory Bowel Disease and Coeliac Disease in every GP practice.
- Accessible information about restricting FODMAP and other trigger foods during exacerbations of IBS.
- A general understanding of the role of life trauma and emotional triggers in IBS and improved access to counselling and therapy services for IBS.
- Factsheets about what constitutes beneficial lifestyle advice for people with IBS.
- Establishment of IBS Self Help Groups, led by trained expert patients or digestive health practitioners, in every GP practice throughout the United Kingdom .
But to help The IBS Network campaign better for what you want, it invites anybody with IBS to respond to this post either on the site or on Facebook or via email at info@theibsnetwork.org and tell us what improvements in the understanding and care for IBS, you would regard most important. .
The Sensitive Gut 