Clinical

Chronic management

IBS/Functional symptoms

Background

  • IBS is found in about 15% of people in the UK, the male to female ratio is about 3:2. Most patients present in the late teens and early twenties though bouts of IBS can occur throughout life according to what happens to the individual.
  • While IBS is not a life threatening condition, it is a major cause of ill health and disability, disrupting social activity and work . The large number of patients affected, the need to screen out other diseases , and absenteeism and impairment in the workplace all constitute a major cost to the health service and society at large.
  • Irritable Bowel Syndrome (IBS), unlike many other gastrointestinal diseases is a medically unexplained disorder. The diagnosis is usually established by a history of chronic abdominal discomfort and a disturbance in bowel habit in the absence of any evidence of organic disease, but patients frequently exhibit other symptoms not directly referable to the bowel, such as indigestion, heartburn, tiredness, frequency of micturition, backache and headache. IBS also encompasses symptoms of emotional distress, and the illness tends to come and go according to changes in the patients’ lives and are exacerbated by life events.
  • Some people develop chronic symptoms of IBS and mild inflammation of the bowel after an attack of gastroenteritis though this is more likely if the patient has been anxious, depressed and experiencing life stress at the time of their original illness.
  • Although food often induces symptoms in the sensitive intestines of IBS, immunological evidence of food allergy is rare as are specific food intolerances.

Current Management

  • Up to 50% of patients, who are diagnosed with IBS by their GP, are referred to hospital for endoscopy and other tests to eliminate more serious illness. Currently there is a tendency for younger patients with IBS to be over-investigated, whereas patients presenting with IBS for the first time over the age of 40 may be under-investigated. Medical management of IBS ends when other diagnostic possibilities are eliminated and patients given symptomatic treatment and discharged.
  • Common failings include:
    • often no enquiry into stressful circumstances,
    • little dietary advice,
    • no integration between primary and secondary care
    • no collaboration with the charitable sector
    • inadequate follow up.
  • There has, however, been a growing recognition of the effectiveness of emotional management and psychological therapies.

Consistency of Evidence/Guidelines

  • The evidence for management of IBS is conditioned by the definition of the illness. Application of diagnostic criteria for IBS is hampered by considerable individual variation and overlap with other physical and psychological illnesses. This and the fact that management of IBS is so responsive to belief and faith and end points are often psychosocial (quality of life, pain), means that,IBS guidelines with IBS change with fashion.
    • BSG Guidelines on the Irritable Bowel Syndrome: Mechanisms and Practical Management 2007
    • NICE Clinical Guideline on Irritable Bowel Syndrome 2008
    • Map of Medicine 2010. These latest guidelines recommend that patients re managed according to predominant symptoms; psychological symptoms form a separated category. This does not conform to the idiosyncratic variety of physical and emotional symptoms and the response of the illness to life changes, which most patients experience.

Patient View

  • Feedback from patients to The IBS Network indicates that the current management of IBS within the NHS could be improved. The commonest complaints are
    • ‘my doctor never listens to me’ .
    • ‘he/she tells me ‘You’ve got IBS. You have to put up with it.’
    • ‘my doctor thinks it’s all in my mind’
    • ‘the treatments never work ; they just cause other symptoms’
    • ‘I’m so afraid that they are missing something more serious; IBS would not make me feel so dreadful.’
    • ‘It must be something I’m eating. I must have an allergy.’
    • ‘I’m desperate. IBS is wrecking my life.’
    • ‘every time I go to the hospital, I see a different doctor.’
  • Many patients find the time and holistic understanding they need by attending alternative or complementary practitioners, which can expose them to the risk of unregulated therapies with little or no evidence base.
  • Local deficiencies in access to toilets is a major source of distress.

Opportunities for Integrated Working

  • Siting the management of most patients (95%) with IBS in primary care by practice nurses would not only give patients a consistent and authoritative framework of understanding, but would also offer continuity of care with access to specialist services when required.
  • IBS is a lifelong condition that can come and go. Practice nurses and patients can learn to understand and manage IBS using the information, advice and support resources of a self help charity, such as The IBS Network (self management plan, self help groups, email enquiry service, telephone helpline).
  • Secondary Care Trusts should be required to support the provision of a community based service. Regional and supraregional specialists in IBS and motility disorders of the gut (neurogastroenterology) could play an essential role in training non medical health care practitioners and advising practices on difficult patients by telephone and email.
  • Tertiary referral centres for neurogastroenterology should exist in every region and offer motility testing, brain gut assessment and specialist psychotherapy services to those patients with severe, resistant illness that cannot be managed in primary care.

Opportunities for Savings

  • We would consider the current situation wasteful of specialist resource. In common with the recently published Map or Medicine on suggested IBS, we would propose to make savings by decommissioning management of IBS in secondary care while improving the management in primary care by:
    • specially trained nurses (or other HCPs) as gatekeepers,
    • self help groups convened for 12 weeks to work through the modules of the IBS self management plan
    • self management supported by access to the nurse and the IBS charity
    • access to regional specialist services if required.
  • Specialists in IBS could support this transition by helping to refine care pathways and train staff in the management of IBS as well as managing tertiary referral centres.
    • Savings could be made in both time and money by:
    • Radical reduction in referrals and investigation in secondary care.
    • Use of specialist nurses to manage IBS in primary care.
    • Integration with the charitable sector (The Gut Trust) to deliver self management information, advice and support via the telephone helpline and email.
    • Integration with dietitians and complementary therapists.

Quality Measures

  • Quality of Life Index (IBSqol).
  • Proportion of patients reporting adequate pain relief
  • Specialist nurses trained
  • Number of local self help groups set up.

Commissioners should also consider additional quality indicators based on the wide range of Areas for Improvement in the NHS Outcomes Framework in order to encourage the patient-centred approach that we consider important in chronic diseases. These areas (numbered according to Outcomes framework) include

  • 2.1 Proportion of people feeling supported to manage their condition
  • 2.2 Employment of people with long-term conditions

Social Policy and Public Understanding

  • The proposed care pathway for IBS represents a major change in how ‘functional illness’ is perceived and managed, placing emphasis on patient education and empowerment, close collaboration with the charity sector and coordinated management of informed patients within a primary care setting. This could lead to greater transparency, greater control by the patient of their own care and a more rapid response to concerns and resolution of symptoms.

References