Endometriosis is a challenging disorder that affects over 1.5 million women in the UK – around 1 in 10 women (Royal College of Nursing, 2015a). Given the uncertain and enigmatic nature of the condition and an average of 7.5 years from the onset of symptoms to diagnosis, endometriosis has a significant impact on women’s lives across a wide range of domains, including family life, work and social life, and quality of life more generally. Endometriosis not only has physical implications but can lead to significant amounts of distress amongst women. A patient-centred approach is required to manage this condition, for which there is no cure.
Health service commissioning consultations identified that complex endometriosis cases (annual incidence of around 5,000 new cases in the UK per year) should be managed by dedicated specialist centres which have been accredited by the British Society for Gynaecological Endoscopy (BSGE). Currently there are 50 UK accredited BSGE centres, and 14 provisional centres. Accreditation of these specialist centres stipulates the importance of, and is dependent upon, having an endometriosis Clinical Nurse Specialist (CNS) on the team. The CNS role is to liaise directly with women using the specialist service and provide these women with on-going support in the management of the condition to improve their quality of life.
As these centres expand and develop, the CNS workload is set to evolve. Recognising the lack of a national standard to define this role, the RCN Women's Health Forum, of which Wendy Norton and Debby Holloway are currently committee members, worked in collaboration with Endometriosis UK, a national patient support group, and the BSGE, to devise a skills and knowledge framework that would inform and enhance local practice and establish a baseline standard across the UK (RCN, 2015b). It is recognised that as this is a developing role, not all nurses have the full skills set required to meet all components outlined in the RCN framework. Anecdotal evidence suggests there is disparity amongst the CNS roles across BSGE centres; however this new post has yet to be evaluated.
Our study will be the first to explore the Endometriosis CNS role and the perceived benefits of this role for patient care. This study takes an exploratory two-phase approach, and uses a mixed methods design:
1. Nationwide survey of CNSs in BSGE centres to examine the current state of this role in relation to responsibilities, and variation in the role across centres (February – March 2017).
This phase has now been completed, and the preliminary findings were presented at the British Society for Gynaecological Endoscopy Annual Scientific Meeting in Hull on the 18th May 2017.
Phase two is now commencing:
2. Telephone interviews with a sample of the survey respondents to explore in more detail, barriers and facilitators to implementing specifications of the CNS role (June –August 2017).
Wendy Norton - Centre for Reproduction Research, De Montfort University
Dr Helene Mitchell - Centre for Reproduction Research, De Montfort University
Debby Holloway – Nurse Consultant Gynaecology, Guys and St. Thomas’ NHS Foundation Trust