As with many chronic diseases, there has been a rise in the prevalence of inflammatory bowel disease (IBD) (a group of disorders including Crohn's disease and ulcerative colitis) in recent years, rising to more than 5 million people worldwide (Meier, 2019). As well as increasing prevalence, the treatments of the condition have become more complex, with new approaches to therapy and monitoring developed. Consequently, the role of the IBD nurse specialist has emerged to support this patient group.
It is interesting to consider the evolution of IBD nursing over nearly two decades. In 2000, when I took up my first post as an IBD nurse specialist, there were seven nurses in post in the UK. Clinicians were enthusiastic about this new role and the impact it would have for the care that we deliver to patients. Since then the number of IBD nurse specialists has increased significantly, with more than 230 nurses now working in this role (Mason, 2017). The positive impact on patient care is undisputed (Sturm and White, 2019).
The majority of nurses in these roles have been in post for less than 2 years (Leary et al, 2018). In my role as Royal College of Nursing (RCN) chair of the IBD Nurses Network, I find myself discussing the sustainability of these services frequently.
Delivering specialist services and safeguarding nurses' wellbeing
When talking to IBD nurse specialist colleagues about their roles and how they developed, the primary objective of many such services, based on a business plan, was to reduce demand on consultant outpatient clinics. The enthusiasm of the IBD specialist nurses in these roles has seen the development of work that has far exceeded these initial plans.
With hindsight, it is clear that a more stepwise approach is required when specialist services are being developed, with better management of the evolution of these services to protect the sustainability of the service and the wellbeing of the nurses.
Key documents such as role descriptives (RCN, 2007) and the Nurses-European Crohn's and Colitis Organisation (N-ECCO) consensus documents (Kemp et al, 2018) describe various aspects of IBD specialist nurses' services but should not be considered prescriptive. Leary et al (2018) recognised that 63% of nurses have a caseload beyond the recommended 2.5 whole time equivalents per 250 000 population, and 84% of nurses are regularly working unpaid overtime. This is most likely as a result of nurses attempting to offer these far-reaching services in isolation.
I commonly see nurses who work alone in the specialty deliver a helpline service 5 days a week, manage large caseloads of patients on biologics and immune-modulating therapy, combined with outpatient clinics and inpatient support, a remit which is clearly unsustainable long term. The provision of specialist services therefore needs to be more planned and realistic. Otherwise, services will fail from the outset. Two steps are needed.
Identifying service priorities
The first step should be to identify the key priorities of a service. Discussion with the key stakeholders (consultants, service teams and patients) about their issues enables the identification of the biggest areas for development; these individuals then become the allies who support the development of the role.
‘For IBD specialist nurses, clinical supervision is key, to provide opportunities to discuss difficult cases and to cope with the emotional challenges of working with patients’
I have used patient stories (National Institute for Health and Care Excellence, 2017) to understand how health care fits into patients' lives. Patient stories can illustrate the implications of how things are done, of the way care is delivered and problems with communication. Similarly, using themes from complaints gives insights into key areas for development. Themes extracted can then be used to develop audit, along with national IBD standards (IBD Standards Group, 2013). ECCO guidelines provide benchmarks against which practice standards can be assessed (Gomollón et al, 2017; Magro et al, 2017).
In the long term, I have found audit a valuable resource to measure the impact of service development. For example, I have noted an increase in the use of biologics and a rise in the number of patients using the helpline in local units. This demonstrates the impact the role has made.
Career development and support
The second step is ensuring appropriate support for the individual in the role. Training of a specialist nurse can take between 6 months and 2 years to consolidate learning and for the individual to develop competency. Alongside clinical exposure, access to professional courses and non-medical prescribing courses is essential to provide the individual with academic preparation for practice. For IBD specialist nurses, clinical supervision is also key, to provide opportunities to discuss difficult cases and to cope with the emotional challenges of working with patients.
Beyond initial training, ongoing managerial support is essential. This gives an opportunity to celebrate successes and also explore any problems in the service. Appraisals and job planning enable the remit of the role to be established; ideally this should be undertaken jointly with nursing and medical leads. This is often where support of the specialist nurse fails, as the remit of the service is often not clear and the role of the specialist nurse is not articulated clearly.
The Apollo Nursing Resource is a website for specialist nurses (https://www.apollonursingresource.com/) and includes the Cassandra app™, which can be used to capture nursing activity. The website supports specialist nurses in articulating what they do within their job. It is also important to recognise that demonstrating nursing activity shows what does not get done when the post holder is not there.
Regular one-to-ones enable the aspirations of the individual to be recognised and supported, promoting retention of staff.
The future
It may be that the future of specialist nursing in IBD is heading for a ‘perfect storm’. A rising incidence of the disease, a reduction in financial resources, rising patient demand and expectations, along with more expensive and complex therapies. The lack of political frameworks that are available in conditions such as heart disease and cancer is likely to contribute to additional resources being scarce in this area.
Therefore it is important, that specialist nurses start to think of the services they offer, and consider a stepwise approach based on clinical need rather than enthusiasm to deliver specialist services.