The inflammatory bowel disease (IBD) clinical nurse specialist (CNS) service at Mid Yorkshire Hospitals (MYH) has been an integral part of the gastroenterology department since its inception in 2006. At that time I worked in the endoscopy unit as a senior staff nurse.
I gained my first real exposure to patients with IBD there, having been involved in caring for newly diagnosed patients and those with long-standing refractory disease.
I was concerned at the impact the disease was having on patients' lives and wanted to learn more about the IBD CNS role and get involved in patient care and management.
This came to fulfilment in 2009 when the opportunity of a secondment as a band 6 IBD CNS arose. I was fortunate to be successful and to join the team, although, initially, I found the role of a specialist nurse challenging and very different from the routine of the endoscopy procedures I was so familiar with. However, I began to develop my skills of patient assessment, communication and knowledge of drug treatments, enabling me to assist patients to recover from their relapsing symptoms. This is something I find very satisfying to this day, and I enjoy seeing patients get back to health and get on with their lives with confidence, assured that they are in control of their IBD.
In 2016, after 2 years initiating an IBD CNS service in a neighbouring trust, I returned to lead the service at MYH.
Our service, like many others, has developed and expanded over the past 14 years. We have utilised the British Society of Gastroenterology (BSG)-supported publication, Service Standards for the Healthcare of People who have IBD, which was first published in 2009 to shape our resources in line with trusts nationwide. The latest version was published in 2020 (BSG, 2020).
The ever-increasing use of biological therapies has had a dramatic impact on the clinical course of both Crohn's disease and ulcerative colitis. Despite the success of biological drug treatments, there remains a reported risk of more than 50% for patients diagnosed with Crohn's disease having to undergo surgery within 10 years of diagnosis, although rates of surgery for strictures appear to be declining (Lamb et al, 2019).
In ulcerative colitis, the reported lifetime surgery rates are between 20% and 30%. The majority of cases are elective procedures for chronic refractory disease (Baker et al, 2021). Therefore, the timing of surgical intervention can be complicated, requiring comprehensive negotiations between both the colorectal surgeon, gastroenterologist and patient, whose input is essential in the process. It is therefore crucial that patients are informed and supported in an appropriate environment to enable them to make an informed choice when considering their options.
A combined approach
The IBD Standards clearly recommend that patients should have access to a monthly joint surgical–medical clinic. The absence of a combined service at MYH was identified by our IBD lead consultant Michael Sprakes, colorectal surgeon Helen Thomson and myself. We were aware that the development of a combined clinic would have a positive impact on the patient experience by reducing the number of hospital visits required and giving patients the opportunity to explore their options and enter into a constructive discussion with both surgeon and physician.
This ‘one-stop shop’ would also help reduce hospital outpatient waiting times, allowing increased clinic capacity in both the routine colitis clinic and surgical clinics, ensuring that all patients would get the most out of each respective service. The provision of this service would also bring the trust in line with other centres and demonstrate a quality improvement.
I was acutely aware of the benefits and need for the clinic after an encounter with a woman patient who had complex problems arising from surgery some years previously. She had also been diagnosed recently with ulcerative colitis. She was experiencing distressing symptoms and was seeking a permanent resolution. It had been suggested to her that surgery might be an option. Unfortunately, this led to a series of hospital appointments in the colitis clinic and then in a surgical clinic where she was presented with differing opinions regarding her management, which ultimately resulted in confusion and a negative experience for her.
I could see the benefits of a combined gastroenterology and surgical clinic and immediately wanted to be involved with the development of the service. The ability to present both medical therapies and surgical options to the patient in one encounter allows aspects of treatment to be explored by all parties, with the patient being central to the decision-making process. In addition, the presence of an IBD specialist nurse in the clinic enables further discussion and clarification if required at a later date, thereby providing continuity.
Pilot clinic
After initial discussions, it was decided to first hold a pilot clinic to measure the practicality and effectiveness of the proposed clinic. The pilot was arranged in the spring of 2019. We had already identified patients who we felt would benefit from the combined clinic and, following discussion with the clinic scheduling team, set up a clinic with allocations, allowing time for both consultants to review each patient. We agreed to have 30-minute appointments and found we were more than able to fill each available appointment. We mailed out appointment letters through the post, and patients were also telephoned by the CNS to notify them that they would be seeing both a gastroenterologist and a surgeon at the same appointment to ensure they were aware and were prepared for the nature of the consultation. We also invited them to bring a relative if they wished.
The week before the clinic took place, recent imaging of the selected patients was re-evaluated and discussed by the team at our weekly radiology meeting. This facilitated a multidisciplinary review of scans, enabling preliminary discussions to be held to consider the options of a surgical intervention or continued medical management, or whether a combination of both treatments would be appropriate.
Pilot clinic procedure
Following introductions by both consultants, a review of the patient's history and current symptoms were discussed with the patient in turn. The possibilities of pursuing available medical treatment or the benefits of surgical management were then communicated and explained, allowing time for the patient to ask questions and clarify points, if required.
An example of cases discussed was a patient with medically resistant proctitis who had tried all but one available biologic treatment. Discussions centred on trying the remaining biological treatment or undergoing a colectomy.
Another case was of a patient who had ulcerative colitis and wanted to discuss colectomy, having not received any immunosuppressive therapy other than steroids.
The cases discussed demonstrate the complexity and subjectivity of therapies and how they are applied in each context with differing outcomes for individuals. The patient plays a central role in the discussion, enabling them to make choices that are acceptable to their health beliefs and lifestyles.
Positive change
Following positive feedback from all participants, negotiations took place with patient service managers from each department to establish a regular scheduled combined clinic every month. All parties involved were determined to make the clinic a success and ongoing careful co-ordination was needed to ensure there were no errors that could potentially lead to wasted clinic slots or clinicians' time.
Throughout the rest of 2019 we continued to successfully maintain clinics regularly, with only minor adjustments relating to the number of patients seen. We were delighted when we were able to demonstrate our success when we took part in the IBD UK benchmarking tool at the end of 2019. IBD UK is a partnership of 17 patient and professional organisations working together for everyone affected by IBD. Our success has, however, been affected by the advent of the COVID-19 pandemic. Despite the disruptive effects of the pandemic, we have managed to continue to hold the clinic, initially as a telephone service. However, its success was limited due to the difficulty of explaining surgical procedures over the phone. We were fortunate to be able to rebook these patients into face-to-face clinics once the first lockdown ended and we are hopeful that we will be able to continue to hold face-to-face clinics once the current lockdown ends.
I was pleased to be nominated for the Gastrointestinal/IBD Nurse of the Year category in the BJN Awards 2020 by my CNS colleagues Natalie Austin and Elizabeth Clayton, and would like to thank them for nominating me and for their support with the service, which has been invaluable.