Inflammatory Bowel Disease (IBD) is a chronic, recurring, and often debilitating condition affecting thousands of people in New Zealand. It doesn’t always respond to treatment as well as we would like, leading to ongoing symptoms with reduction in quality of life. The good news is that studies have shown access to a specialist IBD nurse can make a very real difference in patient outcomes.

The New Zealand Nurses Organisation and the New Zealand Inflammatory Bowel Disease Nursing Group recognise the role of the IBD nurse and have identified potential tasks and skills. The potential work for an IBD nurse is huge as is the demand for IBD nursing care. IBD nursing has been established in the larger public hospitals for some years now. In setting up a new service, there were many hurdles to overcome – funding, training, staff, and, most importantly, support from the IBD doctors. Initially there was speculation that IBD nursing could only be offered in the larger public hospitals, or only in the public sector. In this two-part article, I want to highlight that IBD nursing is performing well in two different environments: in the private hospital setting and in a small rural public hospital.

IBD Nursing in a Private Hospital - Bowen Hospital

Private health care in New Zealand has a significant role in providing care to New Zealanders. Over 1.4 million or just under a third of people currently have health insurance in New Zealand (data taken from Financial Services Council, June 2021). Private hospitals in New Zealand have approximately 206,165 surgical discharges every year, representing around 66% of all elective surgery performed in the country. The proportion of elective surgery is growing in response to the increasing needs of New Zealand’s ageing population and the constraints on the ability of the public sector to meet those needs.

Bowen Hospital is a private surgical hospital in Wellington. It is now part of the Evolution Group of healthcare providers. Bowen has a new purpose-built endoscopy and consulting facility with two endoscopy procedure rooms, a recovery area, and private consulting rooms. Several gastroenterologists and colorectal surgeons work there, allowing good collaboration and a focus on IBD.  

In my practice, I have always had a strong interest in IBD and have been lucky to have specialist nurses working with me over several years. At times, the IBD nurse role has been to support clinical trials of new agents for treating IBD. Providing a specialist nurse service in the private sector does have challenges. In private healthcare, it is the patient’s responsibility to pay, either personally or through their insurance company. Most health insurance policies currently do not cover nurse-led services.

At Bowen, the IBD nurse has protected time for her work. It is acknowledged that the role requires increased responsibility and training which is reflected in employment agreements. Fran is our specialist IBD nurse at Bowen Hospital, and I have asked her some questions to help you understand her work.  

Fran’s Story

Fran is the IBD nurse at Bowen Hospital and is also working in Endoscopy.

How did you get interested in IBD nursing?

My interest in IBD developed through firsthand exposure to patients during their endoscopic procedures, whether patients were receiving routine colonoscopies or coming in for first time assessment due to ongoing symptoms. Observing and assisting in these procedures as an endoscopy nurse sparked my interest in understanding and addressing these conditions. The gastroenterologists and my manager supported me to grow my knowledge of these conditions and encouraged me to develop the IBD nurse role within our private hospital.

What was your training?

In addition to previously completing a post-graduate certificate in Bioscience, I completed the GENCA ‘IGNITE’ IBD Nurses Foundation School, an online 10-week program. This program blended my previous knowledge of disease processes with more focus on IBD: how patients present across different ages and communities, medication pathways and management, and the impact of chronic conditions on peoples’ quality of life.

I also received training about biologic medications offered through our service by their suppliers and my manager. To support my training and ongoing education I actively keep up to date with information being presented to the IBD community by attending local events such as the annual Gastroenterology Conference, participating in the New Zealand IBD Nurses Group, and attending virtual education sessions.

Describe your typical day at work?

A typical day at work involves dividing my time between endoscopy nurse and IBD nurse responsibilities. Currently my responsibilities as an IBD nurse include:

• Being the first point of contact for IBD patients with queries or concerns regarding current symptoms or medication management. It is critical that the person who is the first point of contact has a good understanding of these diseases and can recognise when urgency is required to treat acute flares.
• Collaborating with the specialists to discuss treatment plans.
• Assisting the specialist in initiating necessary treatment plans with our patients.
• Supporting the patient during consultations with the specialist to gain a better understanding of their specific IBD medical needs.
• Offering nursing consultations and education with patients requiring biologic treatments and providing support, especially with their first administration.
• Education on proper infection prevention techniques, storage of the medication, and where to find further support if needed.
• Coordinating and booking IBD patient consultations and procedures
• Furthering the IBD nurse role by developing tools to help my/the practice, including a pre-assessment phone call guide. This guide is an assessment tool I developed from the framework of the IBD GENCA ‘IGNITE’ foundation course, which has a range of symptoms to ask the patient about. This information is sent to the patient’s doctor to review and is very helpful in formulating a management plan. I also created a biologic pre-assessment sheet which is a checklist to make sure the patient has had the necessary bloods/vaccines and education before starting their biologic journey.

Annually, on World IBD Day in May, I organise an IBD education day for the nurses in endoscopy. This day is designed to increase their understanding of Inflammatory Bowel Disease and its impact on patients’ quality of life. I plan engaging activities and create educational posters, appropriately pitched to the nurses’ professional development. The posters included the latest research and best practices in IBD care. Nursing feedback has been excellent and has affirmed the value of this annual event. 

What is your greatest success so far?

My most significant successes as an IBD nurse stem from patients overcoming the challenges of IBD and achieving improved health. Building strong, trusting relationships has improved communication and collaboration, ultimately promoting confidence in patients’ ability to self-manage their disease. Each success and lesson I learn reinforces the IBD nurse role and how vital this position is.

What has been your biggest challenge?

Balancing the responsibilities of my endoscopy nurse role and IBD nurse role poses a significant challenge. Navigating the demands of the endoscopy procedures while maintaining care for IBD patients requires flexibility across a busy unit. I advocate for this IBD role and set time aside to carry out my specific IBD nursing duties. However, the ability to commit myself to this role fully can depend on many factors including the endoscopy list of the day, staffing, and volume of current IBD patients in contact with the unit for treatment.

As more patients become aware of my role and new patients are diagnosed, there will be an increasing demand for an IBD nurse. This will promote a need for a structured, dedicated IBD nurse role that does not have shared endoscopy nursing responsibilities. 

What is your vision for the future?

My vision for the future as an IBD nurse at Bowen is to make IBD nursing its own specialty, separate from endoscopy, and to educate and build an IBD nursing team from our current staff. I want to have several nurses who are able to support, communicate, and educate IBD patients confidently. With this team we can create a structured IBD role at Bowen that patients can access every day of the week. 

IBD Nursing in a Small Rural Hospital – Wairarapa

The Wairarapa has a population of only around 70,000 people, spread over several small towns and rural land. Wairarapa has a long history of farming, forestry, and fishing and more recently wine, food, and tourism. Patients may have to travel a couple of hours or more to get to the hospital. Access to the hospital is often limited by weather. For a small population, there seems to be high demand for IBD services. Currently the hospital has one gastroenterologist providing an outpatient clinic service. The general surgeons and physicians all provide support.

It is difficult to access the larger hospitals in Wellington and Hutt due to patients having to travel over the Remutaka Hill using a windy and precipitous road. The locals quite rightly prefer a local service and having an IBD nurse and infusion service available in their region is truly appreciated.  

Wuss’s Story

Wuss is the IBD nurse at Wairarapa Hospital and the Manager of the Infusion Service. Wuss has Rebecca-Jane Oldfield, also a trained IBD nurse, to assist her. 

How did you get interested in IBD nursing?

I have worked with IBD patients coming in for biologic drugs for several years in the infusion service. When a gastroenterologist started here permanently and indicated that an IBD nurse would be an essential part of developing a service that was non-existent at that time, our manger agreed. I put my hand up as a temporary stopgap, as I felt it would marry up well with my other role as manager of the infusion service here. Time has rolled on and I have continued in the position. Support from other IBD nurses around New Zealand and attending the New Zealand Society of Gastroenterology Annual Scientific Meeting have helped me to understand the role and what is required.

What was your training?

I started with a textbook that came highly recommended. Attending the above-mentioned conference was very useful as there was an IBD nurse-only day where much about the role was demonstrated and discussed.

Since then, I have done the GENCA IBD nurse grounding course which went into more detail about the specifics of the role of an IBD nurse as well as education around the pathophysiology, drug therapy, and management of this group of patients. I also learn a lot from working alongside the gastroenterologist. 

Describe a typical day at work.

A typical day in my IBD role requires meeting new patients who attend clinics, giving them my details and putting a face to a name. Other than working with the gastroenterologist to trouble shoot arising issues with patients, I have created a virtual clinic on Mondays when I phone and check on patients whose therapy may have changed or who are having a flare of their disease. I give advice and support in conjunction with the gastroenterologist. I also check bloods and maintain patient records.

What has been your greatest success so far?

The goal of care is to help people live as normal a life as possible.

I have a patient who had very poor disease control over a couple of years. He had abdominal pain and diarrhoea many times a day. He was unable to work, he was not socialising, his leisure activities were non-existent, and he was quite depressed. He was on the second biologic and felt that he was bound to his house for the rest of his days as his options had run out. Then another biologic became available. He was very keen to give it a try.

The great news is that he has done extremely well on this after such a long time of watching his life disappear before him. He is now back working almost full time, and able to get out of the house living a more normal life. All these things have lifted his mood, and he is feeling well for the first time in a couple of years.

It is very exciting to see the goal of care attained. 

What has been your biggest challenge?

Working in a small rural hospital has unique challenges. Firstly, there is distance for patients to travel and this may limit the options for treatment, for example infusions may not be a suitable treatment option due to travel times. Secondly, there is only one gastroenterologist who is contracted to work one day per week. As you know, disease does not wait for the day the doctor is in the hospital, so there is a lot of communication outside of this time to get optimal patient care, which the gastroenterologist is pleased to do. Lastly, it is time. My role is not only IBD nursing, and I have to balance all my other responsibilities with the infusion service and being a manager.

What is your vision for the future?

I feel that I am still very much a beginner practitioner in this role. In future I would like to have more time to formalise my processes in terms of specific times for specific tasks. Also, I would like to improve data collection around the use of my time, which would help with justifying and growing the role in the future.

I would also like to grow my presence in the community. The gastroenterologist and I have done one education session on a weekend at the invitation of Crohn’s and Colitis NZ, which was well attended, and feedback was very positive. As more IBD patients learn there is a local IBD nurse, I become busier, so the role is growing organically.