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Inflammatory bowel disease: role of the specialist nurse

Judith Murphy
Lower Gastrointestinal Nurse Specialist
North Tyneside General Hospital

Since the introduction of the Scope of Professional Practice nurses have seen an expansion of roles and activities in all areas of healthcare.(1) Some areas have seen more rapid expansion of the role of the nurse specialist than others, for example within the cancer services. Other areas such as chronic disease management have seen less rapid development of these roles, but thankfully the benefits that specialist nurses can bring to patients with chronic disease are increasingly being recognised.

A recent study commission by the National Association of Crohn's and Colitis (NACC) looking at patients' concerns highlighted the need for nurses to provide a specialist service to patients with inflammatory bowel disease (IBD). The complex array of symptoms affecting these patients and their families renders this condition ideally suited for a specialist nurse's input.

What is IBD?
IBD is a chronic illness that incorporates ulcerative colitis and Crohn's disease, which are characterised by relapses and remission of symptoms. The symptoms can include bloody diarrhoea, abdominal pain, pyrexia, urgency to defecate and bowel frequency ranging from between six and 20 times a day and during the night. Additional symptoms include tiredness, lethargy and anaemia. Eating can increase the bowel sensations and evacuation frequency, and therefore these patients can have a reluctance to eat regular meals, avoiding certain food groups and have a poor nutritional status. The bowel symptoms they experience can come without warning, and incontinence is not uncommon.
IBD can affect any age but is most commonly diagnosed in the 20-40 age group. This is a period when people are in the "prime of their life", when patients are at their most productive both economically and socially.(2) Patients may be stepping onto the threshold of higher education, starting out on their career pathway, forming relationships, and regrettably the symptoms of IBD can negatively affect their future performance in all of these areas.(3) Sufferers of IBD not only experience the physical effects of this disease, but the fear of symptoms can lead to social isolation.

These patients require a lot of support and management because of their difficult symptoms and quality of life issues. The NACC, realising the value of the role of nurse specialist, has identified this as a priority for 2005/6, and their objective is to increase the number of nurse specialists in IBD throughout the country.

What is a nurse specialist?
As defined by the United Kingdom Central Council (UKCC), a nurse specialist is "a practitioner who exercises a higher level of judgement and discretion in clinical care".(4)

Some nurse specialists will have a specific focus on caring for patients with IBD. However, most will encompass IBD as part of their specialised role, incorporating other aspects of gastroenterology within their function. For example, many nurses combine IBD with bowel cancer roles, stoma care, benign disease or endoscopy.
Within my own role I perform endoscopy and flexible sigmoidoscopy, and I am training to undertake colonoscopy. These procedures are an integral part of my role as a nurse specialist because one or more of these types of examination will be carried out at some stage of the patients' diseases.

Personal aims for the patient

  • To provide a service that cares for the individual and their family.
  • Using expert clinical skills.
  • Utilising knowledge.
  • Providing education and advice and support.
  • Promoting self-awareness and ownership of their illness.

Professional aims

  • Promote professional development within nursing.
  • Clinical role model.
  • Educator in clinical and formal setting.
  • Participate in nursing research.
  • Team member.

Outpatient clinics
IBD is a condition in which there is typically exacerbation and remission of symptoms. This is unpredictable; traditionally outpatient clinics have reviewed patients at set times, for example six-monthly or annual reviews. Research has identified the changing needs of patients who would prefer to be seen at times of ill health rather than at regular follow-ups.(5) GPs have also expressed a preference for this arrangement.(6) My current practice is altering to incorporate this strategy within the outpatients clinics I run. However, some patients do prefer to be seen on a regular review, and this will be maintained. Patients attending my clinics are a mixture of newly diagnosed, regular reviews and those who have accessed the service wishing to be seen urgently in response to symptom development.

All patients are given the helpline information and access numbers, but in line with the patients aims I ensure the patients have been educated about their condition and understand the importance of seeking medical help at an early stage.

Patient access to services is one of the key elements to my role. Patients are given my helpline number and encouraged to telephone should they have any problems regarding their IBD. This service includes answering any queries, providing a resource for further information and reassurance. It is open to the patient and if they wish, their family members. Generally my helpline receives approximately 600 calls a year and can be allocated into four general areas:

  • Access to the service regarding a flare-up.
  • Advice and information about IBD.
  • Appointments.
  • Information relating to medications.

By analysing these statistics I aim to improve the service for patients.

Immunosuppressant monitoring
A substantial portion of my IBD work is with patients who require monitoring for immunosuppressant therapies. This includes counselling relating to the potential side-effects and precautions they need to take with these therapies. Obtaining blood samples, monitoring the results and taking the appropriate action if these should fall out of the normal parameters. I organise regular follow-up appointments and make arrangements to see patients outside the traditional clinic times. By offering these patient-friendly appointments, compliance with attendance for monitoring is high.

Many nurse specialists who have been in post for a while have developed their individual role through experience and advanced learning. Only recently have courses been made available with IBD as a central core. Competencies are being developed by the RCN with advanced practice roles in mind. The current recommendation is for practitioners to enter at degree level, and to continue their studies up to master's level.

I came into this role with a background of ward nursing at a senior level. I was able to adapt my skills and experience and undertake additional training and learning to fulfil the role of an IBD nurse specialist.
A key element of the IBD nurse specialist role is educating others, and in particular the patients and their families. This enhances the knowledge and understanding of the disease with the resulting effect that a change in behaviour and lifestyle can help disease management. It is essential that adequate time is made available to communicate with the patient and that the nurse specialist has the necessary skills to transfer their knowledge in a language that is understood by the recipient.

Specialist nurses help train other health professionals both in a clinical setting and in a formal capacity. I act as a mentor, resource and guide; I regularly work one-to-one with student nurses, helping to increase their knowledge and skills, which ultimately helps with the delivery of patient care.
Team working
I work across the boundaries of the medical and surgical directorate. I liaise with the stoma care team and  am involved in the counselling of patients who have extensive disease, and for whom surgery is the only option available to them. I closely follow patients in clinic after surgery, and work with the colorectal nurse specialists, with whom I cross cover, therefore offering our patients a service during holidays and study leave. I use other nurse specialists as a resource, and we act as peer supervisors for one another in regard to clinical supervision. It is important when in these pioneering roles not to feel isolated or alone, as this could affect performance, judgement and job satisfaction.

An important part of any nurse specialist's role is the relationship they develop with their patients. With chronic illness comes a whole host of problems not specifically related to flare-up of the disease. Many patients need time to come to terms with chronic illness, and a proportion of patients will need to make significant lifestyle changes to adapt to their illness. The specialist nurse is in a unique position to be able to help and guide the patient along this journey. Quicker, easier access to the service has enabled patients to take control of their illness knowing there is support and guidance a phone call away (see Box 1).


There are those who would argue that specialist nurses are taking skilled nurses from the patient's bedside.
I would not support that view. I believe that through their extensive knowledge and understanding the expert nurse actually enhances the care patients receive. By using their skills as communicators and educators they can increase the level of care given to the patients. Nurse specialists also offer another avenue for career development, encouraging experienced nurses to stay in the profession.

Instead of criticising the lack of bedside delivery of care, specialist nurses should be praised for staying within the profession at the patient's side. Not all patient care is delivered at the patient's bed, and specialist nurses are in a valuable position to offer a more personal nature of care.


  1. United Kingdom Central Council for Nursing, Midwifery and Health Visiting. Scope of professional practice. London: UKCC; 1992.
  2. Nightingale A. An overview of the diagnoses and management of Crohn's disease. Gastrointest Nurs 2004;2(4):31-9.
  3. Walters S. NACC audit of IBD. Chichester: Aeneas Press; 2000.
  4. United Kingdom Central Council for Nursing, Midwifery and Health Visiting. The future of professional practice. London: UKCC; 1994.
  5. Williams JG, Chenug WY, Russell IT, Cohen DR, Longo M, et al. Open access for inflammatory bowel disease: pragmatic randomised trial and cost effectiveness. BMJ 2000;320:544-8.
  6. Chenug WY, Dove JA, Levy B, Russell IT, Williams JG. Shared care in gastroenterology: GPs' views of open access to out-patient follow-up for patients with inflammatory bowel disease. Fam Pract 2002;19(1):53-6.

National Association for Colitis and Crohn's Disease

The IBD Club