Endometriosis is a life challenging disorder that affects over 1.5 million women in the UK – around one in 10 women from puberty to menopause. It is a complex illness that is often not quickly diagnosed when women first present with symptoms.
Evidence suggests that care can be delayed due to a lack of awareness and understanding of the disease amongst health care workers, which can lead to a lengthy diagnosis.
As a commissioned service within complex specialist care there are dedicated specialist centers which have been accredited by the British Society for Gynaecological Endoscopy (BSGE). As part of that commissioning review, it was confirmed that women attending these centres would benefit from improved quality of care by having direct access to an endometriosis clinical nurse specialist (CNS) and BSGE accreditation of specialist centres is now dependant on having an endometriosis nurse specialist in place. This role has been further recognised by the NICE guidelines (NICE, 2017), which expanded the role of the nurse supporting women with endometriosis or suspected endometriosis. This will have a future impact on the nurses who were originally employed to support complex cases.
Recognising the lack of a national standard to define this role, the RCN Women’s Health Forum, in collaboration with Endometriosis UK and the BSGE, initiated a project to devise a skills and knowledge framework that would inform and enhance local practice and establish a base line standard across the UK.
Defining the breadth and depth of the endometriosis clinical nurse specialist role will enhance career opportunities for nurses seeking to develop their own skills to become a CNS. It is envisaged that masters level academic learning should complement the development of this role.
How to become a Clinical Nurse Specialist in endometriosis
As endometriosis centers develop and expand, the CNS role is crucial in promoting smooth pathway management for women. This is an opportunity for CNS's to develop effective clinical and leadership skills through further education and training, and understanding resource management and business planning, to demonstrate the value of the endometriosis CNS role in both in economic terms and patient-centered services.
Recent research by Norton, W. et al (July 2020) demonstrates that becoming a CNS in endometriosis can be challenging, as most nurses have additional clinical roles. The limited time dedicated to the endometriosis role, makes it difficult for nurses to achieve all the CNS role domains, especially those relating to education, creating patient support groups, raising the profile of endometriosis, developing leadership skills to enhance practice, and exercising levels of autonomy.
If you are interested in developing your role as a CNS in endometriosis, the British Society for Gynaecological Endoscopy (BSGE) nurses group may be a useful place to start.
In October 2020, the report published by All-Party Parliamentary Group (APPG) on Endometriosis highlighted the devastating impact endometriosis can have on all aspects of a person’s life, and urged Ministers to take bold action to ensure those with endometriosis have access to the right care at the right time. See: Endometriosis in the UK: time for change.