Endometriosis is a challenging disorder that affects over 1.5 million women in the UK – around 1 in 10 women (Royal College of Nursing, [RCN] 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). As of July 2018, there are 49 UK accredited BSGE centres, and 17 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 role of the CNS is to liaise directly with women using the specialist service and to provide these women with on-going support in the management of the condition in order 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 (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 to inform and establish a baseline standard for nursing practice 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. However, a key aspect of the RCN skills and knowledge framework relates to the CNS as an autonomous practitioner, who is able to undertake consultations independently whilst also working across and within multiple speciality teams. Anecdotal evidence suggests there is disparity amongst the CNS roles, and hours allocated to this role, within BSGE centres; however this new post has yet to be evaluated. A collaborative study between the DMU Centre for Reproduction Research, the RCN, and the BSGE was devised to address this gap to explore how the CNSs’ day-to-day role aligns with the RCN skills framework and identify areas requiring further development.
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
To explore the Endometriosis CNS role within BSGE centres and the ways in which this role can be further developed to improve the well-being of women with endometriosis.
This study employed a two-phased exploratory approach using a mixed methods design.
- Phase One: 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). Sixty-six Clinical Nurse Specialists (CNSs) working in 58 UK-based BSGE centres were invited to take part in the survey. Thirty-eight responses were received producing a 58% response rate.
The phase one findings were presented at the British Society for Gynaecological Endoscopy Annual Scientific Meeting in Hull on the 18 May 2017.
- Phase Two: Telephone interviews with a sample of the survey respondents (n=12) to explore in more detail barriers and facilitators to implementing specifications of the CNS role (June - September 2017).
Key Findings from Phase One and Two of the Study
- Participants had been undertaking the endometriosis CNS role for a mean of 18 months (range: 1 month – 48 months)
- In a quarter of the cases, the endometriosis CNS role had been added to nurses’ current gynaecology-related roles, rather than the nurses having applied for the post.
- 87% of the respondents had another nursing role alongside their endometriosis CNS role. Of these participants, 81% had one other role; 4 participants had 2 other nursing roles, and 2 participants had 3 other nursing roles.
- The average working hours per week as an endometriosis CNS was 13.5 hrs. (Range: 5 - 37.5 hrs. / week)
- The CNS allocated hours were not always aligned to patient contact. 92% of participants were responsible for collecting and inputting endometriosis data and this activity took up most of the participants’ allocated CNS time.
- Despite the emphasis on autonomous practice many of the CNSs do not have their own caseload; over a third (34%) of the respondents reported not currently being involved in nurse-led face-to-face, telephone or email consultations.
- Continuity of patient contact and multi-disciplinary working relationships were reported to be the key benefits of the endometriosis CNS role
- Limited patient contact time and the focus on data management priorities were reported to be the most challenging aspects of the CNS role.
- Further work is needed to address the disparities in hours allocated to the endometriosis CNS role, the clinical priorities for these allocated hours, and the impact of the “other nursing roles” undertaken by CNSs, to ensure the best outcomes for patients.
- As this a new role and CNSs may be coming from a different gynaecology area / speciality (e.g. oncology), they would benefit from a buddying / mentoring system to provide informal support.
- CNSs need to develop and refine their clinical and leadership skills through further education and training, personal reflection, and mentoring from more experienced CNSs so they can effectively lead and develop care provision for women with endometriosis.
- More work is needed to increase clinicians’ and mangers’ understanding of the diverse and valuable skills that CNSs bring to the team, and the vital role they play in delivering high quality care that improves health outcomes and maximises resources.