This site is intended for healthcare professionals as a useful source of information on the diagnosis, treatment and support of patients with lupus and related connective tissue diseases.
It has been a complete privilege and an honour to revise and update this LUPUS UK guide for nurses. It was first written by Sister (Sr) Angie Barwick who worked at the Louise Coote Unit, St Thomas’ Hospital, London, and who is now retired. I remember devouring the copy I was given when starting as a Lupus Nurse. Sr Sue Brown then edited and updated this in 2011 bringing further insights. It is from standing on the shoulders of these two experts that I hope to bring some refreshment to a text that I hope continues to be useful when working and caring for our patients.

Angie and Sue met in the late 1990s when they set up the LUPUS UK Nurse network (LUNN) which has been supported by LUPUS UK throughout. This group continues to meet, biannually currently, and is hosted alternately between central London and Birmingham. Do feel free to get in touch if you also work with a lupus patient, via LUPUS UK National Office. They will happily pass your details along. This network enables nurses to learn from each other and to provide support between meetings. We currently have a mix of speakers, review articles or research of interest, and time for structured discussion on relevant topics. Previously LUNN has offered a platform for nurse-led research which was conducted from 2008-2010, which provided information regarding the type of information patients require when newly diagnosed, and led to the development of a booklet and DVD for those newly diagnosed with lupus.

In this guide, lupus is discussed as broadly as possible, from diagnosis to treatment and management plans. Attention has been applied to the pivotal role of the nurse specialist in supporting the patient throughout their journey, with pragmatic advice about self-management to improve quality of life. This update includes suggestions on individual patient lifestyle choices (i.e. travelling, tattoos and piercing). Although there is no cure for lupus, significant developments continue to occur and have recently resulted in the licensing of targeted therapy for those with moderate to severely active disease, improved treatment and prevention of long term damage.

Patients with lupus are tenacious and entrepreneurial, courageous and resilient. What diagnosis takes from one hand, they fight back and develop resourcefulness with the other. As I have supported and cared for these people and those that matter to them, I have learnt much more than any text book could teach me. As in the previous editions, I hope this revised booklet helps you, to guide and manage the lupus patients you work with, pushing boundaries for and with them, while striving for excellence and best practice.

Sr Rebecca Gilman RN BSc PgDip INP, Lupus Research Clinical Nurse Specialist and Emeritus Professor Caroline Gordon, Rheumatology Research Group, Inflammation and Ageing, University of Birmingham and Sandwell and West Birmingham Hospitals NHS Trust

All websites and web-links checked July 2019 - correct and active at time of going to print.