What do endometriosis Clinical Nurses Specialists (CNS) do?
Well that was what the Royal College of Nursing women’s health steering group and Endometriosis UK wanted to find out.
Changes to healthcare commissioning in 2014/15 highlighted that complex endometriosis cases will only be carried out by specialist centres that are accredited by the BSGE (British Society for Gynaecological Endoscopy). As part of the commissioning process, there now needs to be a CNS dedicated to endometriosis. This is a really positive move forward for both women, and for nurses who want to expand their role in supporting women with this condition.
But as this is a new role there is currently no defined role remit or national standard.
What we already knew…
Specialist centres must have a nurse and there was lots of data being collected about operations. But how that translated into better care was not clear.
So what did we do?
With the aid of a small project grant from the RCN (Royal College of Nursing) we established a working party. This included nurses, RCN staff, Endometriosis UK, patient representative, and BSGE nurses and doctors.
We met and discussed what the CNS should do. Endometriosis UK had already been involved in training of nurses but there was no standard job description, role description, grade and hours worked by the nurses.
So we devised a skills and knowledge framework for this role. It is intended that this guideline will have relevance for managers and commissioners across the UK with specific implications for England. We hope this guidance will enable nurses to advance their skills to provide more patient-centred specialist care and establish a baseline standard to enhance care across the UK.
We then moved on ……
The project progressed to raising the awareness of endometriosis to the wider nursing workforce and to provide resources to support nurses in recognising some of the symptoms women may present with. And so the factsheet was born.
Why is this project important?
We have both worked within the women's healthcare arena for many years and understand the importance of raising awareness of endometriosis which is often misunderstood and misdiagnosed. We have seen first-hand the impact that this debilitating condition can have on women's day to day lives, their relationships and fertility plans.
We felt it was essential that this project was a collaborative one, so working alongside Endometriosis UK and representatives from the BSGE who deliver specialist endometriosis centres, and the sponsorship provided from Ethicon, was invaluable.
So what was the outcome?
2 resource booklets – one, a factsheet that has been launched and distributed at many events to nurses all over the country, and a booklet looking at the role of the CNS in endometriosis.
But that’s not all - we have had 2 events where many of the CNS nurses have come together to look at the role remit, network and discuss good practice and what makes this such a great role to do. As part of our on-going commitment to furthering this Endo CNS role we will continue with the educational networking so we can discuss more ways of developing this crucial role so we are better placed to support women. We know that these specialist nurses can act as the woman’s advocate by providing a link between patients and medical staff, as well as collaborating with patient support groups.
We took the endo factsheet to the BSGE meetings and RCN Congress meeting where we pushed education, education, education onto nurses, especially those not working in women’s health. In addition, our factsheet explains the condition, and provides a pull-out checklist of symptoms that can be used to support the discussion with women and guide earlier referral to gynaecology services.
Increasing nurses’ awareness of this condition has to be the way forward and we hope that in the near future we will see the reported average delay of seven years from presenting symptoms to diagnosis will be greatly reduced, and women will get speedier access to specialist services they need.
Both booklets are available on the RCN website.
Biographies
Wendy Norton is a Senior Lecturer at De Montfort University where she delivers the women's healthcare and sexual health modules. Prior to moving into academia she worked at an Infertility Clinical Nurse Specialist for fourteen years. She is an active researcher and is currently involved in endometriosis research. Wendy is a RCN women’s health forum member
Debbie Holloway is a Nurse Consultant at Guys and St. Thomas’. She is currently the chair of the RCN women’s health forum. Her clinical interests are bleeding, hysteroscopy, menopause and women with bleeding disorders. Debbie runs a gynaecology nursing course for KCL; she teaches regularly and has written many articles.
