Abstract
During the last 30 years inflammatory bowel disease specialist nurses have become commonplace throughout the United Kingdom. These days they play a very significant role in the day-to-day management of patients with Crohn’s disease and ulcerative colitis. They provide advice on the telephone, run out-patient clinics, administer biologic therapies and provide support to inpatients. However, there are no mandatory training programmes or required accreditation to specifically support these activities. As a result of these clinical roles, IBD nurses are now commonly involved in cases of alleged clinical negligence and questions arise to their independent practice and to whom they are directly responsible. This paper reviews these issues in some detail.
Introduction
Inflammatory bowel disease (IBD) includes ulcerative colitis and Crohn’s disease. Both are chronic incurable conditions, which are managed by medications and can also need surgery. This management is mainly by gastroenterologists. The standards of care for management of these conditions are defined in a series of Technology Appraisals and Guidelines from NICE, as well as from the British Society of Gastroenterology. These standards do not depend upon whether the person is a junior doctor or a consultant, a gastroenterologist or a surgeon, a doctor, a nurse or a physician’s associate. This is made clear in the British Society of Gastroenterology guideline which was published in 2019 and included representatives of the Royal College of Nursing and the Association of Coloproctology of Great Britain and Ireland (a surgical organisation) as well as the Primary Care Society for Gastroenterology, amongst others.
During the 21st century with the growth in numbers of people with these conditions and the introduction of new expensive therapies, namely biologics, there has been an expansion in the number of gastroenterologists and an increase in IBD nurses. IBD nurses work as part of the gastroenterology team and are supervised by consultant gastroenterologists. At all times IBD patients will be under the care of a named gastroenterologist or a named surgeon. The critical importance of this relationship with a consultant is the need to appropriately escalate management to him or her when a patient is not responding to treatment. However, a recent review from Italy suggested that the role of an IBD nurse was to perform a “‘filter’ function between doctor and patient, saving time for doctors that will be used for more outpatient visits”. 1
Studies from Scotland and Australia have suggested that nurse-led telephone advice lines are cost-effective interventions, which may prevent unnecessary hospital attendance.2,3 However, in order to ensure the safety of such filters, IBD nurses must have undergone appropriate and ongoing training. For example, in a survey of patients, conducted in 2000, they felt “specialist nurses would have more time to discuss issues and they do not want to bother the busy doctors with them. But they do want doctors to carry out the medical aspects of their care.” 4
The role of IBD nurses
This concept of the active involvement of nurses in the management of patients with IBD has a long history. Over the last 30 years it has moved from providing educational support to the active day-to-day management of patients through telephone clinics and face-to-face consultations. IBD nurses organise investigations, initiate new treatments and supervise biologic therapy.
However, these developments have not been supported by a rigorous training program or any national requirement to attend specific assessed courses, which would provide objective evaluations of knowledge and competence. Indeed, much of the “education” that is available lies in the hands of pharmaceutical companies. Although a number of IBD nurses have prescribing rights and some have trained in endoscopy techniques, this is, by no means, universal. The 2019 survey by the patient organisation, Crohn’s & Colitis UK, reported that 55% of IBD nurses did not have a non-medical prescribing qualification and only 13% had been educated to MSc level. Nevertheless, 98% provided an advice line access to patients; but only 10% had any formal training to provide this service.5–8
The questions which arise include:
Who is responsible for the actions of an IBD nurse? What form should any annual appraisal take?
The purpose of this review is to consider these questions and how they relate to actions for clinical negligence related to the management of patients with IBD.
The training of IBD nurses
An analysis of the qualifications held by IBD nurses in 2019 found that only 13% had a master’s degree and 45% held prescribing rights. The appointment process appears to select candidates on the basis of an expressed interest in the role and once in post there is very limited access to any formal training program for IBD nurses to attend. In 2019 Crohn’s & Colitis UK initiated a Nursing Programme. It is linked to Royal College of Nursing (RCN) Credentialing, which is the only current nationally agreed accreditation for advanced nursing practice and IBD is the only clinical area with specialist credentialing. It can be renewed every three years. 7 However, there are only 37 nurses registered with the programme. 8 It would appear that the number amongst these 37 nurses who have completed the program is small compared to the hundreds of IBD nurses working in the UK. There are no mandatory training programs in inflammatory bowel disease, which require formal assessment or registration with the Nursing and Midwifery Council (NMC). This is a stark comparison with that required of gastroenterology specialty registrars. However, both see similar groups of patients and both work in wards and clinics, where patients are under the nominal supervision of consultant gastroenterologists.
The work of IBD nurses
They are commonly found in the following clinical situations:
out-patient clinics providing direct advice and management; telephone clinics where they provide a similar service; co-ordinating multi-disciplinary team meetings; providing day-to-day monitoring of acutely ill patients on wards and completion of objective measurements of disease activity, such as the Harvey-Bradshaw and Mayo scores.
The core issue arising from these roles is whether the IBD nurse is an independent practitioner or part of a wider team led by a consultant gastroenterologist. Of course, within the National Health Service this distinction has limited consequences, as it is the Trust which ultimately bears responsibility for the costs of successful clinical negligence claims. However, when cases go to trial and there is found to have been negligent care, the Chief Executive is required to report negligent practices to the appropriate regulatory body, in this case the Nursing and Midwifery Council.
Legal issues arising from cases
Recurring issues arising from clinical negligence cases can be summarised as:
providing advice on medication without having prescribing rights; failing to recognise a complex problem and to seek medical advice; providing incorrect advice on the risks and benefits of medications, especially biologics and JAK (Janus Kinase Inhibitors) inhibitors; failing to maintain a log of telephone consultations.
The underlying cause for these errors lies in poorly defined job descriptions and an absence of national validated training programs. Attendance at conferences organised by pharmaceutical companies or of meetings of the British Society of Gastroenterology does not provide a systematic approach.
Conclusions
The way forward must be through an assessed and validated educational program. It could adopt the certificate, diploma, master’s route over a three-year period. It would need to be incorporated within a job plan and should include face-to-face teaching as well as a distance learning component. Cherry-picking isolated modules from such a program would defeat its purpose and prevent the training of a rounded independent practitioner. The development of such a program would then lead to the creation of a specialist register within the NMC as recognition of the status of those who practise as IBD nurses.
