We were proud to be runners-up in the Gastrointestinal/IBD Nurse of the Year category of the BJN Awards 2021. The Exeter IBD Nurse Specialists are Sarah Hawkins, Clare Redstone, Michelle Clarke, Halina Windak and Nina Winter.
Background to our work
The Royal Devon and Exeter NHS Foundation Trust (RDE) is a teaching hospital in the south-west of England. Our catchment serves a mixed urban and rural population of about 400 000 people. Here the prevalence of inflammatory bowel disease (IBD) is estimated to be about 1:125 people; ulcerative colitis and Crohn's disease are 479 per 100 000 and 266 per 100 000, respectively (Hamilton et al, 2020).
The Exeter IBD service looks after approximately 4500 patients with IBD. It is a multidisciplinary team comprising IBD nurses, gastroenterologists, surgeons, dietitians, pharmacists, psychologists, research and ward nurses, histopathologists, radiologists, laboratory staff and trainees.
Current national IBD standards recommend a caseload of 2.5 whole-time equivalent (WTE) IBD specialist nurses per 250 000 population, giving a static caseload of around 500 per WTE (Mason and Leary, 2018). The RDE IBD nursing team consists of 4.96 WTE IBD clinical nurse specialists, equating to a caseload of more than 900 per WTE. Our contribution to the IBD service includes nurse-led and joint clinics, a busy advice line for patients and health professionals, a gastroenterology ambulatory day unit run exclusively by the IBD nurses, a therapeutic drug monitoring service and provision of education to both patients and health professionals.
Our workforce is fortunate to also include trainees, including registered nurses on rotation through gastroenterology services and trainee nursing associates, affording us the opportunity to provide niche training in IBD care and more general support from expert nurses. We are also part of a successful clinical fellowship programme, which means we have had the privilege of working closely alongside extraordinary doctors developing their, and our, skills and knowledge in IBD and research.
Service provision and COVID-19
We quickly realised during the initial stages of the COVID-19 pandemic that things were about to change significantly. With the acute hospital sector facing intense pressures from COVID-19, we began to consider early on how we could continue to provide our essential services.
The RDE IBD nursing team has kept going that extra mile, ensuring patients receive their treatments safely and on time, co-ordinating care across the entire patient pathway and providing education and support for patients and their families/carers. Despite intermittent redeployment to support the acute wards and intensive care unit, self-isolation, and working from home throughout the COVID-19 pandemic, they have continued to embed research into their care. They have kept up to date with research and training, completing research projects within tight time frames, such as the CLARITY IBD study (2020) and the patient-led remote intracapillary pharmacokinetic sampling study (Chee et al, 2022) for therapeutic drug monitoring in patients with IBD.
Supported by recommendations from the British Society of Gastroenterology (BSG) (2021), the IBD nurses have seamlessly moved the gastroenterology day unit service to alternative off-site ‘clean’ areas several times during the pandemic to ensure our most vulnerable patients are treated safely.
A successful transition to an entirely new digital hospital system, with no interruption to the delivery of the biologic and infusion service and IBD advice line, has been achieved. At its peak during the first lockdown, the IBD advice line received a 75% increase in the average number of contacts compared with the previous year. Innovative solutions were implemented to ensure that up-to-date information on COVID-19 was available for our patients, including utilising social media, answer machine messaging and automatic email replies. This process was helped enormously by the tireless efforts of Crohn's & Colitis UK (2021), which continues to provide up-to-date, evidence-based information to IBD patients in various formats. Without this support, we would not have coped with the onslaught of questions and concerns from IBD patients, their families and carers who understandably felt considerable uncertainty, fear and anxiety during the pandemic.
The RDE IBD nurses have continued to provide education and training to local and national teams with energy and positivity. They have adapted their working practices to keep our patients safe, maintain social distancing and assist our most vulnerable patients to shield while always maintaining a high standard of professionalism, showing compassion, love and kindness to our patients and staff. They have ensured our IBD patients continue to receive proactive care essential for IBD management.
By working closely with our laboratory and research teams, we have been able to provide innovative solutions to the challenges COVID-19 has brought when trying to offer proactive therapeutic drug monitoring and disease assessment. This has included providing remote assessment over the phone or via video calls, educating patients to take intracapillary blood sampling at home and posting stool samples directly to the laboratory.
With the rapid changes to the provision of IBD care during the pandemic, utilising the national and international IBD nursing network has been a considerable benefit, particularly when things felt overwhelming or a complex and uncommon question on IBD care arises. The Royal College of Nursing IBD nurse network has been an invaluable resource. It has over 700 members to provide advice, links to evidence, share experience and best practice, and provide support.
A big part of an IBD nurse's role is to co-ordinate care and link the appropriate team members to ensure each patient receives individualised and holistic care. The IBD nurses have diverse and extensive experience and skills, which gives us opportunities to reflect on practice together, bring balance to busy schedules, and share in complex decision making. We support one another and all those who join us, albeit sometimes briefly, to thrive, gain experience and learn.
The team has adapted to many different ways of communicating. For example, social media groups to promote awareness, share experiences and up-to-date learning in a rapidly changing and challenging time. Regular virtual meetings take place with individuals and in groups for weekly multidisciplinary team meetings and meetings with patients, such as the local Crohn's & Colitis UK patient support group and patient panel.
Team members have demonstrated excellent interprofessional working, including participating in the great work promoted through the Flow Coaching Academy and Big Rooms approach (The Health Foundation, 2022), developing a gastroenterology pathway designed to improve patients' emotional wellbeing. Around one-third of patients with IBD will experience anxiety and depression, and psychological distress can increase the risk of relapse. The collaboration between mental health and IBD nursing teams has demonstrated a tangible shift in practice. Providing teaching to improve understanding of available psychological treatments and establishing referral pathways with links to accessible resources has been pivotal in advancing IBD patient care locally. Talking openly about mental health and psychological distress with our patients and colleagues has benefited both patients and staff, increasing confidence, boosting morale and improving therapeutic relationships.
Source: adapted from Ives, 2020
| Top tips for running an inflammatory bowel disease nursing service |
|---|
| Work with local services and teams to gain insight from a variety of sources and collaborate wherever possible |
| Use the IBD and local networks. Share best practice and listen to a variety of other health professionals. Learn from their ideas and innovations. What could be replicated that has worked well for others? What best practice can you share to help others? |
| Gain feedback from patients. They give a direct insight into what is working well—and not so well—in the way your service delivers care. You will discover examples of good practice where lessons can be learnt, and areas of concern where improvements can be made. Put aside your own ideas of how things used to be, listen to feedback and be open to change |
| Support your team. Keep them updated with changes as soon as possible. Let them know that, although change can be difficult, it sometimes forces us to find better ways of working |
| Prioritise needs. These may change over time, so the service will need to adapt to meet the most significant demands |
Source: adapted from Ives, 2020
Recognition for hard work
I have witnessed our IBD nurses work tirelessly with such positivity and dedication and have received several compliments from patients and trainees about my IBD nursing team. For example:
‘I worked with [the IBD nurses] through the beginnings of the COVID-19 pandemic and witnessed their exceptional response to ensuring patient care and safety continued to be at the forefront of everything they did. The remarkable communication between them allowed the IBD service to continue to provide the same high level of care, patiently answering an increasing number of calls from understandably concerned patients and adapt to an entirely new way of providing care effortlessly. As a new member of staff within the team, I was never made to feel like an inconvenience. On the contrary, and despite all the extra pressure on nursing staff during this time, each member of the team took the time to explain what they were doing and why, and were always willing to help or answer questions.’
Gastroenterology nurse on rotation
‘I have always felt completely supported by the IBD nurses and always been really happy with my care. I feel really lucky to live where I do and be under such a great team. The research nurses are also all lovely to deal with and I don't want to forget mentioning them too. I have always felt listened to, remembered and supported.’
IBD patient
I felt it was important to shout about a service working so well during such intensely challenging times. Communication and collaboration are vital to providing excellent care, and I am immeasurably proud of how our IBD nursing team embodies this every day. Receiving this recognition has highlighted the great work we do as IBD specialist nurses here and across the country, where IBD nurses are working with the same dedication and passion our team shows.
We have received congratulations from across the country, which has been wonderful. It has also ignited an interest in what we do, highlighting the importance of speaking out for our IBD patients to ensure they continue to receive the best possible care. We continue to strive to improve the services we provide.
I would encourage anyone to celebrate what they do in nursing and nominate someone or enter themselves in the BJN Awards.