Service improvement from having a dedicated lupus nurse:

specialist lupus nurses

LUPUS UK FUNDED CLINICAL NURSE SPECIALIST IN BELFAST, NORTHERN IRELAND

I would like to introduce myself. I have had the pleasure of joining the Belfast Trust as a lupus Clinical Nurse Specialist. My name is Cathal Boyle and my family and I have made the big step of moving back home to Northern Ireland after 20 years in England. Most of my early career was spent working in critical care in and around London or abroad carrying out aid work. I have spent the last six years working in Rheumatology at the Royal National Hospital of Rheumatic Diseases in Bath. This is a Lupus Centre of Excellence and I am looking forward to bringing what I have learnt there, here to Belfast.

Unfortunately, I joined the Belfast trust just before the COVID-19 outbreak so I only had the briefest of opportunities to see patients in clinic before lockdown. However so far, the team and I have set up Nurse-led Lupus annual review clinics. These Clinics are a vital way of monitoring lupus patients and in-line with National Institute of Clinical excellence (NICE) guidelines. When the lockdown ends, my aim will be to have routine nurse-led clinics and Emergency flare clinics, but this will be planned alongside discussions with patients to ensure the local needs are met within the service.

Although the pandemic has made it difficult to meet new patients, I am contactable via the rheumatology advice line. I will also endeavour in the meantime, to contact as many of our patients as I can. I look forward to meeting you all.

I have been doing clinics with Dr. Arvind Kaul, who runs the lupus service in our department. My normal consultation time is half an hour for each patient. It is 15 minutes longer than that of the doctors’ giving patients more time to discuss their concerns with me and allowing me to devote additional time to teaching them about their medications, understanding their diagnosis and assisting them with their lifestyle modification, among other things. I discuss with patients the importance of taking control of their condition and identify ways to improve drug compliance. I also encourage the active involvement of the patients’ loved ones as these patients need understanding and assistance as they go through the challenges in the long term.

The addition of my role to the service had increased the frequency that patients are seen and resulting in getting the support required. With the doctors’ clinics and mine, we aim for patients to be checked at least every three months or even earlier. The increase in appointment slots has paved way for a more flexible service. Now, I can book patients needing immediate attention, such as those who are flaring. I also visit patients admitted in the wards and schedule them for follow-up clinic appointments two weeks after their discharge to check on how they are getting on.

It can be very challenging and overwhelming, especially to the newly diagnosed, so I need to make sure that they get on board with their condition and medications. I see my role as being a key worker for lupus patients, who work with them and their significant others in order for them to better manage and cope with their condition and, hopefully, help them live as well as possible. Since this is a new role, one challenge is the need for a designated helpline to support patients when they need to speak to someone and this is one of the things I am working on at the moment. I believe this is essential for the patients’ access to the service. Currently I share my telephone number to patients I consult in the clinic. I also find that there is a need for a generic email account for lupus enquiries who prefer to communicate in writing. This email address can also be given to the patients who are outside our catchment area or who are abroad so they can forward results to me and can still get in touch when necessary. At the moment, I use my own trust email address for this purpose.

As with other departments, the pandemic has also affected the way our clinics run. Although many consultations are still conducted over the phone, those done face to face are gradually increasing and patients with active disease are being encouraged to come to the clinic.

With the aim of providing and maintaining the highest specialist care for our patients, our department continues to launch activities and projects. It also collaborates with other specialists like obstetrician, dermatologist and nephrologist in special clinics conducted quarterly. A project was recently launched, one that would assess the patients’ general health; their physical, emotional, social and economic wellbeing as well as to measure the burden of tinnitus on our patients suffering from this symptom. While it is quite a challenge to collect data due to limited face to face interaction, I hope that this study will generate substantial outcomes and we will be able to eventually publish it. We also have a patient database, which I continue to update, to accurately monitor the number of lupus patients we look after.

Raising awareness about lupus in our community is also one of our aims and LUPUS UK has been playing a significant role in this. I actively promote the official lupus website, and provide available leaflets on the disease. Lupus awareness month is in October and we plan to put posters around the hospital, set up a stand with leaflets and ask one of our patients to tell us their story. This will hopefully help increase the knowledge and understanding of the general public about lupus.

Lupus is relatively rare and very complex, and we are still discovering more things about it. I had special connection with some of our lupus patients in my previous trust and I witnessed how the disease had affected their lives dramatically. Now I am seeing more lupus patients, I am becoming more aware of how truly distressing this disease can be, whatever the age, sex or background. Personally, one of my relatives has Systemic Lupus Erythematosus (SLE) so it will be meaningful and beneficial for me that I specialise in this area knowing that it probably runs in our family. I look forward to gaining more knowledge and understanding about this condition and I am excited to learn and participate in future studies and projects related to improving the service or management of lupus patients.