{"paper_id":"323adbf6-69ce-4d99-a583-c8e3e1d6f9ba","body_text":"The acceptability, adaptations, reach, barriers and enablers to the roles \nof endometriosis nurses and pelvic health & wellbeing coordinators in \nthe Welsh Health Boards: a service evaluation by qualitative methods \n \nAuthors  \nEleanor Clarke1, Natalie Rees1, Denitza Williams1,2, Alison Cooper1, Libby Humphris 3, Adrian \nEdwards1, Natalie Joseph-Williams1 \n \nAuthor Affiliations \n1 Health and Care Research Wales Evidence Centre, Cardiff University, United Kingdom \n2 Women’s Health Research Wales, Cardiff University, United Kingdom \n3 Health and Care Research Wales Evidence Centre Public Partnership Group, Cardiff University, \nUnited Kingdom \n \nAbstract \nEndometriosis Nurse and Pelvic Health and Wellbeing Co-ordinator (PHWC) roles were introduced \nin each health board across Wales in early 2020. They were established to improve endometriosis \nand pelvic health care, as women can face severe problems and with major impacts across their \nquality of life, requiring expert care. How these staff roles have been incorporated into each health \nboard has differed according to local need and as such, is not fully understood, nor are the benefits \nof the role as perceived by staff. The aim of this service evaluation is to explore the views and \nexperiences of endometriosis nurses and PHWCs on those roles and services. \n \nMixed qualitative methods were applied (interviews and workshop) between January 2025 and June \n2025 to explore the study objectives. Interview data were thematically analysed to identify key \nthemes. Workshop data were reported. The Cardiff University School of Medicine Research Ethics \nCommittee waived the requirement for ethical approval as the project was found to be a service \nevaluation. \n \nThe roles are important to health boards and post-holders with discussion of positive impact on \npatients across the health boards. Key factors in the success or limitation of these roles include: \n \nAt the macro-level:  \nAvailability of resources for staffing, training, administration, clinics and theatre time.  \nService fragility: The services, particularly endometriosis, rely on usually one person per health \nboard and so cease during leave or recruitment, with no succession planning.  \n \nAt the meso-level:  \nColleague, peer and other healthcare professional support. \n \nAt the micro-level: \nClarity of role description and establishing boundaries of the service. \nSupport and guidance for new endometriosis nurses. \n \nFunding Statement \nThe Health and Care Research Wales Evidence Centre is funded by Health and Care Research \nWales on behalf of Welsh Government. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \nNOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice.\n\n \n \n \n \n \n \n \n \n \n \nThe acceptability, adaptations, reach, barriers \nand enablers to the roles of endometriosis nurses \nand pelvic health & wellbeing coordinators in the \nWelsh Health Boards: a service evaluation by \nqualitative methods \nSeptember 2025 \n \n \n \n \n \n \n   \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  1 \n \nHealth and Care Research Wales Evidence Centre Research Team  \nDr Natalie Joseph-Williams | Associate Director and Reader in Improving Patient Care  \nDr Eleanor Clarke | Research Assistant \nDr Alison Cooper | Senior Clinical Research Fellow Cardiff University. Associate Director Health \nand Care Research Wales Evidence Centre  \nDr Denitza Williams | Women’s Health Research Wales, Cardiff University, United Kingdom  \nProf Adrian Edwards | Health and Care Research Wales Evidence Centre Director  \nPublic Partner \nLibby Humphris \nStakeholders \nJanine Hale | Head of Women’s Health and Children’s Health, Welsh Government \nHelen Munro | National Clinical Lead, Women’s Health Strategic Clinical Network, NHS \nExecutive \nLynn Beachey | Senior Women’s Health Policy Manager, Welsh Government  \nDebbie Shaffer | Founder of FTWW / Fair Treatment for the Women of Wales  \n \nEvidence need submitted to the Evidence Centre: 19 September 2023 \nInitial Stakeholder Consultation Meeting : 27 February 2024 \nFinal Report issued: September 2025  \n \n \nThe report should be cited as: Clarke E, Rees N, Williams D, Cooper A, Humphris L, Joseph -\nWilliams N, The views of endometriosis nurses and pelvic health & wellbeing coordinators on \ntheir roles: a service evaluation (PR0031). September 2025.  \nDisclaimer: The views expressed in this independent report are those of the authors, not necessarily Health and Care \nResearch Wales or Welsh Government. The Health and Care Research Wales Evidence Centre and authors of this work \ndeclare that they have no conflict of interest. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  2 \nExecutive Summary \nBackground  \nEndometriosis Nurse and Pelvic Health and Wellbeing Co-ordinator (PHWC) roles were introduced \nin each health board across Wales in early 2020. They were established to improve endometriosis \nand pelvic health care, as women can face severe problems and with major impacts across their \nquality of life, requiring expert care. How these staff roles have been incorporated into each health \nboard has differed according to local need and as such, is not fully understood, nor are the benefits \nof the role as perceived by staff. The aim of this service evaluation is to explore the views  and \nexperiences of endometriosis nurses and PHWCs on those roles and services . \nMethods \nMixed qualitative methods were applied (interviews and workshop) between January 2025 and \nJune 2025 to explore the study objectives. Interview data were thematically analysed to identify key \nthemes. Workshop data were reported. \nKey Findings  \nThe roles are important to health boards and post -holders with discussion of positive impact on \npatients across the health boards. Key factors in the success or limitation of these roles include: \n1. At the macro-level: \no Availability of resources for staffing, training, administration, clinic s and theatre time  \no Service fragility: The services, particularly endometriosis, rely on usually one person per health \nboard and so cease during leave  or recruitment, with no succession planning  \n2. At the meso-level: Colleague, peer and other healthcare professional support \n3. At the micro-level: \no Clarity of role description and establishing boundaries of the service  \no Support and guidance for new endometriosis nurses \nKey Priorities \nKey priorities that could support the endometriosis nurse and pelvic health wellbeing coordinator \nroles are summarised in figure one below. These are summarised from table seven (section five). \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  3 \n \n \n \n \n \n \n \n \nFigure one: Summary of what could be done to support the endometriosis nurse and / or pelvic health wellbeing coordinator roles\n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025. \n 4 \nTable of Contents \nExecutive Summary ..................................................................................................... 2 \nAbbreviations ................................................................................................................ 6 \n1. Background ........................................................................................................... 6 \n1.1. Endometriosis service ......................................................................................... 7 \n1.2 Pelvic Health Wellbeing service ........................................................................... 7 \n1.3 Current understanding of women’s services in Wales ........................................ 8 \n1.4. Aims and Objectives ............................................................................................ 8 \n2. Methods ..................................................................................................................... 9 \n2.1 Sample .................................................................................................................. 9 \n2.2 Participant recruitment ....................................................................................... 10 \n2.3 Data Collection ................................................................................................... 11 \n2.4 Data Analysis ...................................................................................................... 12 \n2.5 Researcher Reflexivity ....................................................................................... 13 \n2.6 Ethics and governance ....................................................................................... 13 \n3. Results ..................................................................................................................... 14 \n3.1 Participants ......................................................................................................... 14 \n3.1.1 Interview participants ................................................................................... 14 \n3.1.2 Workshop participants ................................................................................. 14 \n3.2 Interview Themes ............................................................................................... 15 \nTheme A: Role Description ................................................................................... 16 \nTheme B: Support from others ............................................................................. 26 \nTheme C: Reach and inclusivity of the roles ....................................................... 28 \nTheme D: Resources ............................................................................................ 29 \nTheme E: Skills and Boundaries .......................................................................... 32 \nTheme F: Context ................................................................................................. 33 \nTheme G: Perceived Benefits of the roles ........................................................... 35 \nTheme H: Service development ........................................................................... 36 \n3.3 Workshop Results .............................................................................................. 38 \nKey difference to the interview data ..................................................................... 38 \nSuggested ways forward ...................................................................................... 39 \n4.   Discussion ............................................................................................................ 40 \n4.1 Summary of findings ........................................................................................... 40 \n4.2  Our findings in relation to the Women’s Health Plan ....................................... 41 \n4.3 Strengths and limitations .................................................................................... 48 \nStrengths ............................................................................................................... 48 \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025. \n 5 \n4.4 Conclusions ........................................................................................................ 48 \n5. Implications for practice and policy .................................................................... 49 \n6. References .............................................................................................................. 52 \n7. Acknowledgements ............................................................................................... 53 \n8. APPENDIX ............................................................................................................... 54 \nList of Appendices ..................................................................................................... 54 \nAppendix 1 – Interview schedule ............................................................................. 55 \nAppendix 2 – Interview consent form ....................................................................... 58 \nAppendix 3 – Workshop Breakout rooms Facilitator Guide .................................... 60 \nAppendix 4 – Workshop invite .................................................................................. 61 \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  6 \n \nAbbreviations \nPHWC Pelvic Health and Wellbeing Coordinator \nWHIG Women’s Health Implementation Group  \nMDT Multi-disciplinary team \nKPI Key Performance Indicator \nFTWW Fair Treatment for the Women of Wales \nHCP Healthcare Professional \nBSGE The British Society for Gynaecological Endoscopy \nWHP Women’s Health Plan \nDGH District General Hospital \nRCN Royal College of Nursing \n \n \n1. Background \nThe Women’s Health Implementation Group (WHIG) was established in May 2018 to provide leadership \nand strategic direction in relation to several key areas of women’s health policy where particular \nopportunities for improvement had been identified. Its remit was ministerially-driven and included \nensuring an all-Wales approach was in place to help break down barriers, join up pathways between \nprimary, secondary and tertiary care and manage women’s health in the community.  \nThe initial priority of the WHIG was to oversee the implementation of recommendations from the \nvaginal mesh and tape review, however the Minister for Health and Social Services subsequently \ndirected the group to also consider the recommendations arising from the endometriosis and faecal \nincontinence reviews.  The WHIG has now been replaced by the National Strategic Clinical Network for \nWomen’s Health. \nEndometriosis Nurses and Pelvic Health and Wellbeing Co-ordinator (PHWC) roles were introduced in \neach health board across Wales around five years ago, and health boards receive funding from Welsh \nGovernment on a recurrent basis to support these roles. They were established to improve \nendometriosis and pelvic health care (including pelvic mesh complications), to improve access to expert \ncare because many women can face severe pain and symptoms that impact their quality of life [1]. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  7 \n1.1. Endometriosis service  \nEndometriosis is a common gynaecological disorder, affecting up to one in ten women of reproductive \nage in the UK [2]. It is a condition where endometrium-like tissue is found outside the uterus, often in \nthe pelvis (e.g. ovaries, peritoneum) that ranges in severity. Hormonal changes of menstruation then \ncause bleeding, chronic inflammation, pain, and scarring. The exact cause is unknown, and diagnosis can \nbe a long, difficult path for patients, taking an average of ten years and 26 doctor visits from initial \npresentation to diagnosis [2]. Treatment includes symptom management, hormonal treatment [3] or \nsurgery [4].  \nThrough the Women’s Health Implementation Group (WHIG), specialist endometriosis nurses were \nappointed in each health board in Wales in Spring 2020 funded by Welsh Government [1]. A central job \nspecification was developed, and each health board submitted a bid that requested support to meet \nlocal demand and capacity. The WHIG also set up the ‘Endometriosis Cymru’ website to raise awareness \nand provide resources.  \n1.2 Pelvic Health Wellbeing service \nThere is an increasing focus on prevention and conservative therapies in the treatment of pelvic health \nproblems. This may include pelvic pain, prolapse or incontinence. Aligned to this are complications \narising from vaginal mesh surgery which require tailored and expert knowledge to support sufferers.  \nPelvic health problems can include complications from vaginal mesh implants previously inserted during \nsurgery for urinary incontinence, pelvic organ prolapse or birth trauma [5]. Concerns were formally \nheard in the ‘Review into Vaginal Mesh and Tape in Wales’. One recommendation from this review was \nthat a ‘care co-ordinator type role should be embedded within the Pelvic Health and Wellbeing Pathway \nfor women with mesh associated pain as a first point of contact’ for patients [5]. These co-ordinators \nwould support the development of a Pelvic Health and Wellbeing Pathway from the community into \ntertiary services as necessary for other pelvic health issues such as continence care and endometriosis. \nThe WHIG introduced Pelvic Health Wellbeing Co-ordinator (PHWC) roles in each health board, funded \nby Welsh Government. Basic requirements of the roles included: \n• Appropriate experience of working in the NHS. \n• Support the Senior Programme Manager to implement a pelvic health and wellbeing care \npathway in the health board from community up to, where necessary an MDT including \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  8 \ncontinence care, physiotherapy, pain management and psychology services. For women and \nmen. \n• Undertake an assessment of any additional resources required for the pathway. \n• Provide leadership and strategic direction to ensure the health board meets the full \nrequirements of the Pelvic Health and Wellbeing Pathway.  \n• Sign post patients and facilitate ongoing care in the health board for pelvic health issues \nassociated with vaginal mesh, endometriosis and faecal incontinence. \n• Support the senior programme manager to provide expert advice to the WHIG, ensuring key \nhealth board stakeholders are engaged in the pathway design and delivery.  \n• Work with other PHWCs to form a Network to share best practice and identify opportunities for \ncontinual service improvement \n• Work within the context of the health board governance arrangements. \nEach health board then developed individual job descriptions and business cases based on local needs \nand submitted to Welsh Government. Staffing resource included in the bids varied from one to four \nmembers of staff; staff disciplines and hours requested also varied. These bids were signed-off and \nappointed during 2019.  \n1.3 Current understanding of women’s services in Wales \nHow these roles have been implemented, adapted, and incorporated into each health board service is \nnot fully understood, nor are the staff perceived benefits of the roles. Further, no previous evaluations \nhave examined key barriers to the roles being implemented in routine practice or summarised what is \nworking well. \nEvaluation of these roles can inform service improvement and implementation of future womens health \nservices or roles across health boards.  \n1.4. Aims and Objectives  \nThe aim of this service evaluation is to explore the views of endometriosis nurses and PHWC’s on those \nroles and services.  We used qualitative interviews underpinned by process evaluation methodology and \nimplementation frameworks to explore:  \n• What the roles look like in practice (and any variation from the intended roles)  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  9 \n• Acceptability of the roles (as defined by Sekhon et al [6] is the extent to which the participants \nconsider the roles to be appropriate, based on their cognitive and emotional responses).  \n• Whether participants believe the relevant patients are being reached \n• What has worked well and what supports the roles and service delivery \n• Barriers and key challenges to delivering the roles and service delivery \n• Recommendations for improvement going forward \no Within the role \no Across health boards \no For other women’s health services \nThe process evaluation element was intended not only to capture what was happening in terms of \ndelivery and perceived benefits but also to explore discrepancies between expected and observed \ndelivery and outcomes, how context influenced these, and to provide insights for future improvement \nand sustained roll-out.  \n2. Methods  \nMixed qualitative methods were applied (interviews and workshop) to explore the views and \nexperiences of endometriosis nurses and PHWCs on their roles and service, including the barriers, \nfacilitators and benefits.  \nInterviews focused on experiences and personal views about the endometriosis nurse and PHWC roles \nand services. During the workshop findings to date were shared and then participants suggestions for \npositive ways forward to support development of implications for practice for these roles. \n2.1 Sample \nThe interview sample included endometriosis nurse and pelvic health and wellbeing coordinator roles \n(see Table 1). \n \n \n \n \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  10 \nTable 1: Interview eligibility criteria \nInclusion   Exclusion   \nEmployed by NHS Wales (in any of the seven health \nboards) during the service evaluation as: \na) Endometriosis nurse or  \nb) Pelvic health and wellbeing coordinator \nc) Covering one of the roles if that person were not \navailable \nAND Available during the recruitment period.  \nA period of absence, such as maternity leave or \nextended sick leave, that lasted throughout the \ntime of recruitment.  \n \n \nThose eligible for the workshop were all interview participants, study stakeholders, specialist interest \nwomen’s health researchers (limit of two slots).  \n2.2 Participant recruitment \n2.2.1: Interview recruitment \nTargeted sampling was applied to invite all potential participants. The research team was provided with \npotential participants’ names and work email addresses. After receiving approval from each health \nboard, potential participants were invited to participate. For those who agreed, online interviews were \nscheduled at a time convenient to them. A link to the electronic consent form (Appendix two) was \nprovided in advance of the interview. A member of the research team (EC) was available to respond to \nany queries by email and at the beginning of the interview \n2.2.2 Workshop recruitment \nInterview participants provided consent to be contacted for the optional workshop at the end of the \ninterview. The workshop date was arranged  in consultation with stakeholders and scheduled during \nlunch time to support attendance. All potential participants were contacted with a workshop invitation \n(appendix four) including the date, time, explanation of what would happen and why.  A member of the \nresearch team (EC) was available to answer queries prior to the workshop.  \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  11 \n2.3 Data Collection \n2.3.1 Interviews  \nSemi-structured interviews using an interview schedule (see section 3.5 below and appendix one) were \nconducted online via TEAMs between January 2025 and April 2025. Interviews were conducted by EC \nand NR and audio/video recorded.  Please see box 1 for a summary of key topics. \nBox 1 - Summary of key topics explored in the Interview schedule \n- About the role: description, preparation, support, how it fits in the system.  \n- Working with others: do you work alongside other practitioners, who, \ncolleagues attitudes and expectations  \n- Patient experience: Are the right people being reached, patient impact, \npatient feedback, patient needs/desires, patient access, unintended \nconsequences \n- Changes to the role: evolution of the role and why, could anything be \nimproved, barriers, facilitators.  \n- Recommendations: What are they? What has worked well? Significant \nchallenges or changes. \n \nThe interview schedule was based on two theories. The Implementation Outcomes Framework [7] \nprovides researchers with outcomes to assess the success of implementation (or execution) of an \nintervention (for this evaluaiton, these new women’s health roles). The MRC Process Evaluations \nFramework a guide for a systematic approach to conducting a process evaluation, which is examining \nhow an intervention is implemented and delivered, for a complex intervention such as these roles. The \ninterview schedule was then developed with the research team, stakeholders and Public Partner (LH). \nAfter the first interview the interview schedule was redesigned to flow more easily, refine topics and \nreduce the number of questions – topic schedules are designed to be iterative.  \n2.3.2 Workshop  \nFollowing the initial results presentation, participants were separated into breakout rooms: one for each \nrole (see Appendix three for workshop facilitator guide). The facilitators guide comprised four main \ntopics (with prompts) as summarised in box 2 below.   \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  12 \nBox 2: Topics explored in the workshop  \n- Role clarity (PHWC) or supporting new starters (endometriosis nurses)  \n- Colleague support \n- Boundaries \n- Resources (finance) \n \nWorkshop questions were developed based on themes identified as both barriers and facilitators to \nimplementation. These were chosen for their potential to be influenced (excluding fixed contextual \nfactors) and were shaped with input from both stakeholders and the research team. One question \ndiffered between rooms. Questions and prompts were asked by facilitators from the Evidence centre in \nthe break out room (AC and NR in the endometriosis nurse room and DW and EC in the PHWC room). \nDiscussions focused on identifying positive steps to support staff in their roles and improve services for \npatients. After the breakout sessions, all participants reconvened for a feedback session to share \ninsights and collaboratively develop ideas for moving forward. \n2.4 Data Analysis \n2.4.1 Interviews analysis \nTranscripts were transcribed verbatim and imported into NVivo (version 14) qualitative analysis \nsoftware. Endometriosis nurse and PHWC interviews were analysed together, with meaningful \ndifferences discussed in the results section. \nTranscripts were thematically analysed [8] by EC and NR using deductive and inductive coding, with \ndeductive codes from the MRC Process Evaluations Framework [9]. Inductive codes are those which \ndevelop during coding from the data itself. Codes and analysis were discussed at weekly project \nmeetings with the study team (NJW, LH, NR, EC and AC) to support reflection, keep the analysis targeted \nand develop implications. Codes were grouped into overarching themes which were charted into a \nframework (including verbatim quotes). \n2.4.2 Workshop analysis \nThe workshop was recorded but not transcribed. Reflexive notes were made by all facilitators from the \nbreakout session. One researcher (EC) listened to all the breakout sessions and the feedback session and \ncompiled the discussions around the main themes of the interview data. \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  13 \n2.5 Researcher Reflexivity \nQualitative research acknowledges that researchers influence the research at every stage (from design \nto  analysis). It is therefore important to reflect on the perspectives and experiences we bring to this \nproject. EC is an experienced qualitative researcher with a psychology and medical background. She has \nled women’s health qualitative work and process evaluations previously. She is a white, non-disabled, \ncis-female with personal experience of using the Welsh NHS.  NR is a GP with a special interest in \nwomen’s health, working in the Welsh NHS since 2003 and in general practice in Wales since 2010. She \nholds qualifications in women’s health including the DFSRH (2009), and is a trained contraceptive \nimplant and coil fitter (since 2018). She is a white, non-disabled, cis-female and a novice researcher \ncurrently working as an Associate Academic Fellow at Cardiff University. \n2.6 Ethics and governance   \n This project was classified as a service evaluation rather than research, and therefore did not require \nethical approval.  This classification was confirmed using the Health Research Authority Decision Tool \n(https://www.hra-decisiontools.org.uk/research/ ) (developed for the Medical Research Council) and \nverified by the Cardiff University Joint Research Office. The research team liaised with each health \nboard’s research and development department individually to obtain permissions to conduct the \nevaluation.  \nAn online Participant Information Sheet / Consent Form in Microsoft Forms (appendix two) was emailed \nto all participants prior to interview. It was made clear that they did not have to complete the consent \nform and that there would be time for discussion prior to the interview. \nAt the start of each interview, and before recording began, participants were reminded that they could \nwithdraw at any time, they did not have to answer a question if they did not want to and that we could \nstop for a break should they want.   \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  14 \n3. Results \n3.1 Participants \n3.1.1 Interview participants  \nFor this service evaluation, all 17 eligible participants were successfully recruited. Of these only one was \nrecruited under inclusion criterion c,  which allowed for the participation of a colleague covering one of \nthe roles if the substantive postholder was unavailable. In addition, three endometriosis nurses were in \nrole but not eligible to participate. Table two below shows demographics of interview participants based \non interview data. \nTable 2 – Interview demographic data: From interviews, so is best as can be estimated from the data.  \n Endometriosis Nurses PHWC’s \nTotal number 10 10 \nNumber eligible 7* 10 \nTotal number interviewed 7 10 \nNumber of health boards represented 6 7 \nJob role when PHWC Nurse N/A 3 (1 uses the PHWC \nrole time not clinically \nbut on service \nimprovement) \nPhysiotherapist N/A 1 \nGovernance / \nadministrative** \nN/A 1 \nAdministrator N/A 2 \nProject manager N/A 1 \nManagement N/A 2 \nPrimary clinical area of \nfocus \n \n \nEndometriosis 7 Within mixed \nMesh N/A 2 \nContinence N/A 2 \nUrogynaecology N/A 3 \nColorectal N/A 1 \nMixed of the above N/A 2 \nLength of time working \nin the role (incomplete \ndata) (months) \nRange 4 – 60  9 – 63  \nAverage 27.7 47.2 \n*Three were on long term maternity / sick leave,  **Not a clearly defined role within the interview \n \n3.1.2 Workshop participants \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  15 \nThe workshop was attended by four stakeholders, four endometriosis nurses and six PHWCs (table \nthree). As the workshop was in June, some were on leave and there were some who wanted to attend \nbut had previous commitments.    \nTable 3: Workshop participants \nRole Number attended workshop  \nStakeholders  4 \nEndometriosis nurses 4 \nPHWCs 6 \n \n3.2 Interview Themes  \nSeven key themes and 21 sub-themes were identified through the interviews (see Table four). \nTable 4: Interview themes and subthemes. \nMain themes Sub themes  \nA: Role Description Endometriosis nurses \nPelvic Health and Wellbeing Coordinator (PHWC) \nLack of Role Clarity \nDifferences across health boards \nGetting started in the roles \nFragile service \nAt capacity and pressure to perform \nB: Support from others  Advocates and senior staff support \nPeers working together \nMulti-disciplinary working  \nC: Reach and inclusivity of roles \n   D : Resources Finance \nAdministration and clinic space \nTheatre time \nStaffing and training  \nE: Skills and Boundaries Boundaries \nF: Context  Tertiary care \nPatient group \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  16 \nCOVID \nF: Perceived benefits of the roles \nH: Service Development Implemented or imminent changes  \nIdeas for future service improvements \nRecommendations for the roles \n \nTheme A: Role Description  \nEndometriosis nurse and PHWC participants were passionate and knowledgeable about their work. They \ndiscussed the roles as being positive for patients (see theme G: Perceived benefits) and for many these \nroles have ‘evolved’ (a PHWC) from the initial idea and continue to do so.  \nA.1 Endometriosis nurses \nEndometriosis nurses had a shared understanding of the condition they treat, their expected profession \nand clinical background. \n“the aim of the role is to support the care and management of patients with a diagnosis \nor suspected diagnosis of endometriosis in [the health board].” (an endometriosis nurse) \nAn endometriosis nurse participant explained the purpose of the service:  \n“to add support for them [patients] and also the GPs to manage their care until they're \nseen in gynaecology. Once they've been seen by us, they can still come back […], if they \nneed any help or support, they can still come to this clinic if they're having symptom \nproblems or just need a little bit of advice”. \nSome endometriosis nurse participants described what might happen at an initial appointment, which is \nusually face to face (see box 2). However, this is not exhaustive and would depend on the patient. They \nthen follow-up with patients, usually virtually, in shorter 20-30 minute appointments (see figure two for \nan example of how an endometriosis nurse service can flow). The regularity of these clinics differs across \nhealth boards.  \n \n \n \n \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  17 \nBox 2 - What can happen at an initial endometriosis nurse appointment  \n• Pre-appointment pelvic health pain questionnaire \n• Medical and surgical history from the patient (despite often notes being provided). Extra \nfocus on: \no Rich gynaecological history (e.g. menarche). \no Sexual function will be discussed \no Bowel symptoms \no Back pain \no Urinary symptoms \no Fertility wishes \no General energy \n• Symptom discussion \no Body mapping (of pain) \no Pain scoring (to track) \no Impact of symptoms on daily life \n• Treatment discussion: what has been tried so far \n• Discussion of endometriosis diagnosis and / or prognosis  \no Explanation of surgery and its likely benefit (or not) \n• Sometimes there are tests such as: \no Ultrasound \no Smears \no Swabs \n• Formulate a plan with the patient \no Discuss potential referrals / requests for tests \no Discuss hormone therapies - new / altered: may be initiated with the consultant. May be \njust information.  \no Explain support, e.g. Endometriosis Cymru [10] and their symptom tracker [11]; \nEndometriosis UK [12]: links to be sent after appointment.  \no Any need for a letter to an employer \no Clarification of what information will be sent after \nAfterwards a clinical note is sent to the GP and patient with any information requested. \nReferrals, tests requests, letters, etc actioned. \nParticipants talked about listening to patient journeys and counselling them through the reality of \nprognosis and treatment options.  \n“a big part of my role is listening and being able to create a space where a patient can be \nheard, because they've been gaslit and think that a lot of them don't trust health care \nprofessionals, because of their experiences.” (an endometriosis nurse) \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  18 \nThere were reflections that clinic appointments could be difficult for patients who come with different \nexpectations. \n“I will give them all the tools and all the information […] It's up to them if they choose to \ndo it or not. I can't force it upon them, but I also give steps, so I'll give them maybe three \nor four steps ahead, so that if this doesn't work, they, they can try this.[…] it also \nempowers the patient with knowledge that they could go to their GP and say well, this is \nwhat they've said.” (an endometriosis nurse) \nEndometriosis nurses work beyond their own endometriosis nurse-led clinics. Other tasks discussed \nincluded: Supporting consultant-led clinics; attending general gynaecological clinics; pre or post op \ncounselling; supporting patients in other appointments; perform post-operative follow-up; lead \nendometriosis MDT meetings; medication injection clinics; fertility clinics. Some endometriosis nurses \nalso do their own administration which is time consuming. \n“I do a lot of administration, which probably takes up about 40, 45% of my time, which \nwill take me away from being patient focused quite a bit.” (an endometriosis nurse) \nEndometriosis nurses give patients a phone number or email to contact them at any time with their \nconcerns or queries. This was reported as an important task but created “an awful lot of work on a daily \nbasis because it fills up”.   \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  19 \nFigure 2: An example of a patient pathway through the endometriosis nurse service \n \nA.2 Pelvic Health and Wellbeing Coordinators (PHWC’s)  \n“I think the main goals of my role is to try and improve, focusing on women's pelvic \nhealth at present, how we can improve waiting times, treatments of patients and \noutcomes, how we can better reach these patients in a better timely manner.” (a PHWC) \nIt became apparent during interviews that there was a real variety within the PHWC roles. This can be \nseen from the demographics in table two (section 3.1) above. Clinical areas varied from a focus on mesh \nto a focus on continence or more general urogynecology issues, with some services including male \npatients.  \nProfession of PHWCs varied from non-clinical, such as administrative and governance to clinical staff \nsuch as physiotherapists and nurses with some not patient facing.  \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  20 \nFigure 3: An example of a pelvic health and wellbeing service with two pelvic health and \nwellbeing coordinators  \nThese services are incredibly varied. This example shows one service with two PHWCs who worked in \ndifferent aspects of the role.   \n \nClinical PHWCs discussed in-depth history taking, examination of pelvic pain and standard data scoring \nto support surgery decisions such as the  “central sensitisation inventory” (a PHWC) for mesh patients.  \nSome participants described specialist therapies and clinics, such as one who offers a broad range of \nprocedures and tests within urogynaecology.  \nImproving waiting times within pelvic care was seen as an important outcome of the PHWC role. \n “we've been, sort of, steered more to look at urogynae side and waiting lists” (a PHWC) \nSome services were set up through identifying a need within the health board around pelvic health, \nperhaps giving long or short term aims. At least one participant felt that the PHWC role was to advocate \nfor women patients within the health board. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  21 \n“Everything around the mesh issues that I read […] part of the role, I thought,[…] was to \nactually coordinate as a health board with higher management and the stakeholders to \nimprove care so things like that didn’t happen again.” (a PHWC) \nA.3 Lack of role clarity  \nParticipants reported that the way in which the role is described and understood impacts their work. \nLack of role clarity, particularly around the PHWC role, could cause confusion especially as the roles \nwere being set up or if there was not hand over between staff.  \n“I think at that point, none of us really knew what, what we were starting with, where \nwe were starting, or what was needed.” (a PHWC) \nPHWC roles differ widely in terms of the clinical area they focus on and the profession of the post holder \n(table two, section 3.1), where staff may not be patient facing, nor have a clinical background: \n“the conversations we've had at the pelvic health network that there can be physios, \nthere's admin people, there's nurses. […] that's the, the tricky bit with this role I think, is \nthat no one role is the same and so if you say it, it can mean a number of things to a \nnumber of different people in terms of what we're actually doing in the service really.” (a \nPHWC) \nParticipants discussed confusion not only in the definition of the PHWC role but within the title itself.   \n“the thing that I find can be confusing for people is the term 'pelvic health' because, […] \npelvic health covers such a wide area, doesn't it. I mean, even just in women's alone, you \nknow, you can look at pelvic health in terms of maternity, postnatal, antenatal, you can \nlook at it in gynae, and it can be endometriosis, it can be pelvic floor dysfunction , it can \nbe menopause, menorrhagia.[…] So, I think that's where the title has been misleading, I \nthink. Or could be confused.” (a PHWC) \nBeing in the same role title but working with different patient groups can be difficult for staff to manage.  \n“it’s a very confusing role for me as to what we’re supposed to be doing as Pelvic Health \nCoordinators. […]. So where we thought everyone was going to be setting up a service \njust to see mesh patients, it didn’t sort of come across as that when we were in these \nmeetings.” (a PHWC) \nAnother participant explained that amongst all the pelvic health issues that “mesh […] that was a little \nbit forgotten from my perspective” (a PHWC). In one health board at least, it was discussed that the \nPHWC role would have a different clinical focus,  \n“I think the feeling very much was that those [mesh] patients were already known to us \nand they've, they'd either been supported or they'd been then signposted to tertiary \ncentres for resolution of their, you know, problems […], I think the feeling was that there \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  22 \nwas already a system in place. And I, if I'm honest, I don't know that they were very \nclear” (a PHWC).  \nPelvic health is not a gender specific term, in some health boards the PHWC service treats men, in \nothers they do not. This caused confusion or a lack of engagement from some staff or teams.  \n“Because the money came in to women's specifically […] there wasn't the, kind of, \nengagement, there wasn't the same buy in” (a PHWC). \nSome participants, particulalry PHWCs, discussed that role clarity could be improved by introducing KPIs \n(Key Performance Indicators) or alternative outcome measurement. Other participants felt that would \nnot be feasible due to the variety in the roles and because they were not set from the start.  \n“we haven't had, as far as I am aware, any real KPIs or any clear steer on definitely what \nour outcomes would be. […] So, I think that's what made it quite difficult really” (a \nPHWC) \nA.4 Differences across health boards and roles  \nSome key service differences found during interviews are shown in table five below. It is important to \nremember that this was qualitative data and not everyone was asked the same questions. \nTable 5: some key themes of difference between services \nKey emerged theme of difference Endometriosis \nservices* \nPHWCs \nConduct own administration within clinical role 3 out of 6 2 out of 5 \nReferral into services Patients are able to self refer  2 out of 6, with a 3rd \non hold.  \n \nAt least two \nservices, not all \nwere discussed or \nrelevant.  \nNeed for a health board \nconsultant already involved in \nthe patients care \n2 of the 6 services \ndiscussed a need for \npatients to be under a \nhealth board \nconsultant. \nNot discussed. \nAdmission criteria: only patients with a confirmed \ndiagnosis of endometriosis (not suspected) can be seen \n1 service discussed \nthis  \nN/A \nOnward referrals to physiotherapy declined due to lack of \nfunding for the patient group \n3 services found \nreferrals rarely or \nnever accepted \nNot discussed. \n*One endometriosis service was not included due to long term leave and so there are a maximum of six \nendometriosis services discussed.  \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  23 \nDifferences between health boards that were relevant to the job roles were discussed by participants \n(see box 3).  \n“this is an extremely rural health board, huge ageing population that's increasing […]. \nHuge challenges in terms or kind of locations.” (a PHWC) \nSome participants perceived that the roles had aimed for the same service across Wales. \n“The initial plan was that everybody would develop the same services. I don’t think that’s \nhappened.” (an endometriosis nurse)  \nParticipants are aware of these differences and discussed the difficulties this can have for them as well \nas the impact on patients. \n“We have meetings with all the other Welsh endometriosis nurses, I know other people \nare not, have not been in a similar position and it’s really sad. Really, really sad for them \nand the patients, because it’s not fair that, you know, somebody can live over the, in \nanother health board, and not get access to the same service that they could get here, \nyou know. So, yeah, don’t know how we solve that.” (an endometriosis nurse). \nHours for the roles differ between health boards, particularly for PHWCs, as these were determined by \nlocal health board needs and then bid for rather than specified. This means there is variation in what can \nbe achieved.  \n“I’m only doing two days a week anyway, so what, what somebody can do on two days is \nnot what somebody on five days can do” (a PHWC). \n \n \n \n \n \n \n \n \n \nA.5 Getting started in the roles \nBox 3: Relevant health board differences (not service specific) \n• Access to secondary/tertiary care  \n• Support for the service \n• Ability to make change \n• Population e.g. age, deprivation \n• Urban vs rural geography \n• Sparse vs concentrated geography \n• Organisational change  \n• Transport links (for patients) \n• Division of health board administratively.  \n• Access to resources \n• Different computer systems / software \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  24 \nSome PHWC’s were slotted into existing services which utilised their previous skills and were able to \nstart quickly. But for other PHWCs and the endometriosis nurses, there was a need to set up a new \nservice.   \n“there was nobody to copy off or fall into so I just had to, sort of, develop it myself” (an \nendometriois nurse). \nThere were sometimes local issues which delayed setting up the services, with one health board only \nbeing able to set up endometriosis clinics in 2024 which was “out of our control as nurses. It was a bit \nhigher up” (an endometriois nurse).  \nFor new starter endometriosis nurses there was a period between employment and starting \nindependent clinic work, regardless of how long the service had been established. Participants explained \nthat this was due to the uniqueness of the role and pressure for high knowledge and skills needed to run \nclinics independently. The period between starting the role and being confident to run clinics was up to \nsix months.  \nAfter the initial intake of endometriosis nurses (who were given training), there is not a routine \ninduction for staff in these roles. Participants discussed a variety of ways they had (or were in the midst \nof) prepared for the endometriosis nurse role, especially for independent clinics. Participants reported \nshadowing clinical staff over TEAMs and in-person, attending operating theatre “seeing the disease and, \nyou know, what it does.” (an endometriois nurse).  \n“it really set me up, you know, observing them in clinic, and how they did their \npaperwork, the questions they asked, that allowed me, you know, to learn a lot and to \nthen sort of mirror how I would do my clinics” (an endometriois nurse) \nSome PHWC’s discussed similar preparation activities to the endometriosis nurses, though one PHWC \ncommented that, “a lot of it is self-taught, I will, would say”. \nA.6 Fragile service  \nDuring recruitment, there were two health boards where the endometriosis nurse led service was not \nrunning and at least one other where it was reduced, due to staff on long term leave. We were unable \nto interview anyone from one of these services. Participants discussed the fragility of their services (for \nPHWCs this concern of service fragility depends upon their role) where there is often one person \nrunning the specialist service for the entire health board or a large geographic section.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  25 \n“It's such a fragile service and we need more endometriosis nurses to be able to cover \neach other, you know. It's having just one person is, is not enough [...] It's not a robust \nservice at all.” (an endometriois nurse) \n \n“We're just so fragile and, you know, small that until we can develop we are really \nrestricted I think. […] basically, if, like, the nurse's off sick or whatever there is no \nservice.” (a PHWC) \nThere is concern from participants at the lack of staff able to take over and cover the role as well as \nawareness of impact on patients. \n“I'm very proud of the work that the endometriosis nurses are doing. It's really valued \nand very needed, which goes to show that when the nurse is taken out of the equation, \nwhat a void that's now created. […] They're [patients are] desperate. They're desperate \nand I completely understand. They need someone.” (an endometriois nurse) \nThere was discussion that part-time job shares could attempt to cover for each other but that can be too \ndifficult if the role is split geographically. Providing cover for these specialist roles is not straightforward, \neven if it is planned leave (such as maternity leave). \n“we haven't got cover for her, because it takes about six months for me to train \nsomeone. By the time we train a nurse to, to fill that role and all the checks, et cetera \nhave gone through she will be back.” (an endometriois nurse) \nA.7 At capacity and pressure to perform \nParticipants are aware they are running a much-needed service for a patient group who have often been \nlet down by other health professionals. Despite most wanting to reach out to more potential patients \nthere is concern that there is not capacity in the service for increased demand.  \n“how much do we advertise the service right now to open the gates and just let them \nflood in. Or do we just try and try to, try to titrate it in a little bit, bit by bit, just so we \ndon’t get too completely and utterly overwhelmed?” (an endometriois nurse) \nParticipants don’t always feel equipped to manage all that is being asked of them. The high demand is \nfelt keenly by participants, who need more resources to cope (see resources theme) as they see \nfirsthand the effects on patients.  \n“We can’t say to people you’re waiting three to four years for surgery, but then […] not \noffer them the support that they need […] I’m only one person, and I’m not qualified in all \nof that. I can do as best as I can, but I think we have a duty to these ladies that we need \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  26 \nto support them, and at the moment, I do feel we’re not giving them that service.” (an \nendometriosis nurse) \nTheme B: Support from others  \nParticipants reported that support from others (including the MDT, line managers, peers and other \nhealth board staff) was an important factor in delivering the role. Levels of support vary across Wales. \nB.1  Advocates and senior staff support  \nSome participants reported having a member of staff as an advocate, who may be more senior. This was \ndescribed by one participant as a ‘driving force’  and these advocates or mentors could offer \nencouragement, advice, contacts, funding or support with seniors. They  contributed to an environment \nwhere the service was encouraged to grow and develop. Whereas other participants felt more isolated \nand shouldered the work alone.  \n“got [name 1], she’s a force to be reckoned with. She really is. […] she’s the driving force \nbehind it. […] she will kind of give me something and say, […] ‘run with it’.”  (a PHWC) \nParticipants discussed relationships with senior staff as potential barriers or facilitators to their work. \nConsultants were discussed as key stakeholders:  \n“the ones who aren’t doing that great I can categorically tell you is because they don’t \nhave the support of their consultant.” (an endometriosis nurse) \nLine managers coud be from different professional backgrounds which participants reported could lead \nto feeling misunderstood or unsupported. One participant reflected on having a line manager of a \nsimilar background: \n“she’s the first line manager I’ve had […] that’s got experience in women’s health. […] \nshe’s very focused on the endometriosis service, and it’s one of her main focuses as part \nof her new role. […] she’s very invested in making the service bigger and better” \n(endometriosis nurse).  \nPerceived support or interest from senior managers was important to executing role tasks, particularly \nchanging services. \n“when we wanted to create this [new service], our directorate management team were \nvery supportive” (a PHWC).  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  27 \nSenior management interest is seen as an indicator of the prestige of the service within the health \nboard. Participants, particulalry PHWC’s, reflected that senior managers may be more engaged if KPIs \n(Key Performance Indicators) or other outcome measures were linked to the roles.  \n“my higher management don't have a clue what we're actually doing in the service. […] if \nyou're not measured it does, kind of, start to go, 'Oh, it doesn't matter, does it?' Whereas \nif you are measured, you have to keep delivering.” (a PHWC). \n \nB.2 Peers working together \nParticipants shared resources between peers to support each other and reduce health board differences \n(theme A.5). However, this approach did not seem to be formalised. \nParticipants discussed meeting up regularly for each role. The PHWC’s explained that this no longer \ntakes place but could be beneficial to restart to support peer working and sharing of good practice. \n“I'm quite passionate that I think from an All Wales, we need to be working together. \nEven if it's just as coordinators. We used to have meetings, just the coordinators. We \ndon't even do that. [Interviewer: Since COVID or?] Since COVID, yeah. And they, you \nknow, it was just to share ideas; share the governance that you're using. […] because \n[this health board] is unique and, you know, there are different things, but the basics \nshould be similar. You should all adapt and be pretty much using the same thing.” (a \nPHWC) \nConversely, some endometriosis nurses discussed still meeting though it is unclear how well utilised this \nmeeting is: “Every fortnight, I think it is, but I haven't been to one yet” and “I can't comment on whatever \nthey, what they're doing in other health boards. I don't know.” mentioned another endometriois nurse. \nB.3 Multi-disciplinary working  \nThe NHS works on a model of multi-disciplinary care and so participants working clinically refer (or need \nto refer) patients to other healthcare professionals so that patients can receive holistic and appropriate \ncare. Those whose referrals are accepted report being able to provide better care for patients. However, \nsome participants report that referrals to some healthcare professionals are rejected due to funding and \ncontract decisions. As shown in table five (section A.4), three partcipants discussed that referrals to \nphysiotherapy are often declined. This is a barrier to care for patients, and can result in the participant \nhaving “a bit of a battle” to access those services.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  28 \n“Physio management level, there’s no funding.[…] and they haven’t got the capacity in \ntheir service, with their current staffing to do it. It’s not that they’re being difficult. They \nwant funding” (an endmetriosis nurse).  \nAn outcome of multidisciplinary working can be mixed messaging for patients. For example one \nparticipant explained that consultants could make surgery seem more positive than other members of \nthe team would describe it. For patients this could be confusing and make other conservative \ntreatments seem less worthwhile.  \nEndometriosis nurses discussed wanting to support GPs manage patients in the community through (1) \npromoting their service and (2) training GPs on endometriosis diagnosis and treatment. Participants \nreported struggling to contact GPs when they had tried to reach out.  \n“I think access to primary care is one of my biggest barriers.” (an endometriosis nurse) \nThere was discussion of GPs supporting care plans, but then an example of a GP changing a care plan:  \n“a patient being given the hormonal contraception and told to take it for three months, \ntry not to have a period. […] She goes to the GP, […] who said, but you're a woman, you \nare supposed to bleed. So this poor girl then spent the next few months still going \nthrough the same thing, going completely against what she’d been advised. To me, \nthat's quite worrying, for one, because I think actually, you're going against what has \nbeen advised.” (an endometriosis nurse) \nTheme C: Reach and inclusivity of the roles \nParticipants reported varied success in how much they felt able to reach the right patients and different \ncommunities. Some explained that to reach more patients there would need to be more staff in the role \n“we see people, different, different localities, you know, different needs […] Which is \nnice, because everyone is accessing our [clinical] service.” (a PHWC). \n \n“There probably could be more, but there needs to be more of me.” (an endometrisis nurse) \nSome felt that there were no missing patient groups, whereas others reported less reached patient \ngroups. Examples included younger patients, those from ethnic minority groups, those who can not \nspeak english, people without a fixed address, the traveller community and men.  \n \nSome participants discussed that self-referral for women’s health services could or did improve access \nfor people from different communities.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  29 \n“especially women's health, […] you don't want everybody to know, do you? And in small \ncommunities like this, unfortunately, sometimes you can't get away from that. So I really \ndo think the self-referral element is important” (an endometriosis nurse)  \nOf the thirteen services discussed in this service evaluation, four (table 4) were reported as having a self-\nreferral route in interview data.  \nService promotion varied, from working with colleagues to further outreach such as a PHWC who \nexplained different outreach initiatives such as coffee mornings. \nParticipants reflected that there was some uncertainty about reach partly because there is a lack of \nrelevant data in some services, with one service working on this issue at the time of data collection. \n“We’ve got a study going on at the moment where we’re asking patients just to fill out a \nquick questionnaire, just so we can demonstrate that most of our patients coming \nthrough are white and British so that we can go and say, can you give us some funding, \nor something that we can start to integrate?” (a PHWC).  \nHowever, some participants reflected there is not the capacity to collect extra data.  \n“the nurses approached us last week and they want us to fill in this database thing for \npatients coming through the door […] And this database would really benefit us just to \nshow how many patients we're actually dealing with. But […] we don't really have time \nto capture that in the first place.” (a PHWC).  \nTheme D: Resources  \nAvailability of resources varied, especially for clinic space, MDT and administration support. Participants \ndiscussed the areas of women’s health and endometriosis as generally under resourced.  \nD.1 Finance \nParticipants generally discussed funding with a weariness: “It is difficult because when we suggest things \nit’s always comes back to funding and money and that is a major, sort of, set back.” (a PHWC). \nParticipants are frustrated at what the lack of funding into women’s health indicates, as one \nendometriois nurse explained: “because it’s [endometriosis] underfunded, it’s under prioritised”. There \nwas discussion that women’s health and endometriosis specifically struggle to get funding partly due to \na lack of evidence and recognition in the health service:  \n“Because, you know, it’s one, this disease is everywhere, but it’s not recognised. We need \nto raise it and let everyone see it costs more than diabetes to society. […] there’s no NHS \ncost for endometriosis on […] that I can find.” (an endometriosis nurse) \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  30 \nParticipants seemed generally unsure how to increase funding and resources, with some considering if \nallowing service overwhelm would ultimately lead to service expansion:  \n“The only way we will be able to develop the service is by literally having a waiting list \nand then actually realising, 'Okay, you've got demand. We will find some money and help \nyou.' That, that's the only way we're gonna do it. We're gonna have to be swamped to \nexpand.” (a PHWC) \n Another participant reported they did not have the skillset of knowledge to produce a business plan \nindependently: \n“Truthfully, I wouldn't even know where to begin with a business plan. So this is why I am \nworking with [colleague]. But again, I fall short. I don't even know where, who you would \ncontact” (a PHWC). \nIt was reported that England felt better resourced than Wales \n“England's got 64 endometriosis centres. We've got, what... Well, one. [health board] \ntryna be one, we're tryna be one, but we're just getting blocks because of money” (an \nendometriois nurse) [researcher note: currently Singleton hospital in Swansea and UHW \nin Cardiff have BSGE accredited endometriosis centres with a provisional centre at the \nGrange in Newport and a private centre at the Spire in Cardiff: bsge.org.uk 15th July \n2025] \nD.2 Administration and clinic space \nSpace for clinics and provision of administrative support for clinical staff varies between health boards. \nClinical staff who do their own administrative work then have less time with patients.  \n“we’re very lucky here in [health board] to have the service that we’ve got. And I know \nthat a lot of the other pelvic health coordinators who are clinical, they struggle with the \nadmin side of things” (a PHWC). \nClinical staff are also not trained in administrative tasks and so take longer than a specialist. \n“I don’t have any admin support. So I type all my own letters, book all my own clinics, \nand obviously do all my own leaflets. I do a lot of administration, which probably takes \nup about 40, 45% of my time, which will take me away from being patient focused quite \na bit.” (an endometriosis nurse) \nClinic space is not a barrier for some participants and for others is prohibitive. For many, virtual clinics \nhave alleviated some of this pressure. \n“We have to fight for it, continually fight for it because of other services.” (a PHWC) \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  31 \nD.3 Theatre Time \nRestricted operating theatre time and resulting long waiting lists for surgery are a major issue for all \nendometriosis nurses and some PHWCs by limiting the care they can provide within the service.  \n“You need more theatre time. We have a huge waiting list.” (an endometriosis nurse).  \nParticipants discuss being a support for patients while they endure a long wait for surgery which can be \neffected by local decisions.  \n“[A surgeon] lost when she went on maternity leave, her theatre list was given to \nsomebody else, and they refused to give it back […] You need more theatre time. We \nhave a huge waiting list” (an endometriosis nurse).  \nA lack of theatre access is compounded by cancellations:  \n“if lists get cancelled, and these ladies who've been waiting three years could then \npotentially wait another few months. So I'm, I'm constantly firefighting patients, trying \nto apologise or I'm sorry about the waiting list, whereas if we were operating on people \nin a more timely fashion we could be getting through a lot more”. (an endometriosis \nnurse) \nOne PHWC explained that the theatre time for their service increased through business cases compiled \nby the consultant (advocate theme B.1).  \n“when I started the role, we struggled to get theatre time and theatre capacity for these \npatients. As a driving force of [name 1 - consultant colorectal surgeon], she’s managed to \nget it funded by the health board, and we had to do business cases, and we had to \npresent it to the clinical board and things.” (a PHWC) \nD.4 Staffing and training \nStaffing is an issue for participants, with discussion of a need for more staff in the same role (i.e. more \nendometriosis nurses and PHWC’s). Participants report being unable to meet the needs of patients \n(related to theme A.7). There is also a need for more staff to cover leave (see A.6 Fragile Service).  \n“with one in 10 women diagnosed or queried endometriosis. I just, I was just scratching \nthe surface. There are so many people to see and I did feel I wasn't in the best quality of \nservice, because I just couldn't get to everyone. And that's, that's quite. It soon became \nquite clear that we, I, it wasn't enough.” (an endometriosis nurse) \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  32 \nParticipants discussed being keen to improve their skills and knowledge (see theme A.4 for pressure for \nhigh knowledge levels). Participants reported being unable to attend conferences / training they felt \nwould benefit the role.  \n“they won't fund me to go to it this year [the BSG conference], which I think is a bit of a \nshame, because it's not training that can be offered in house. [...] if they want to improve \nwomen's health, we need to go to these training courses” (an endometriosis nurse). \nTheme E: Skills and Boundaries \nSome barriers and facilitators to the endometriosis nurse and PHWC roles were from the participants \nthemselves. The skills and experiences people bring to the role can affect the service offered (such as \nwhether certain tests or prescribing could be offered) and the motivation of the participant.  \n“I'm a non-medical prescriber, so I'll be able to do prescribing within the community \nsetting, and then also doing coils and then hormonal treatments as well” (an \nendometriosis nurse) \nE.1 Boundaries \nParticipants reported setting different boundaries, some in a less obvious way. Boundaries facilitated \nroles by protecting the service or the person’s own workload or wellbeing or knowing their own \nprofessional limits.  \nBoundaries for wellbeing: Participants discussed accepting and sharing that they needed a timeframe \nfor email responses. Some participants reported avoiding or leaving online forums if their roles were \ndiscussed as that could have a negative impact, despite wanting to be there to understand patients \nperspectives. A participant described being able to limit her own workload by recognising that she was \nnot running an emergency service, which allowed her to achieve a more sustainable balance. \n“when I first started this job, I was probably working 54 hours plus a week. And at one \npoint then I ended up being owed ridiculous amounts of hours to the point where I had to \ntake a step back and think, '[own name], this is ridiculous now. […] The one thing I \nemphasise is that I cannot be an emergency service. And that's how I know I just have to \nswitch off. I get back to them when I can, you know, and that's all I can do. But as a \nnurse, I don't feel right doing that. Does that make sense? It's not what you want to be \ndoing, but you have to look after your own mental sanity.” (an endometriosis nurse). \nBoundaries of professional limits: Participants explained knowing their professional limits. \n“I know my boundaries, I wouldn't just instantly start somebody on something \n[medication] that wasn't, sort of, if I wasn't sure” (an endometriosis nurse). \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  33 \nParticipants also discussed pushing back against service creep, such as a clinic that was meant to be used \nonly for endometriosis patients becoming used by a wider variety of women.  \nBoundaries for service capacity: There was some discussion of limiting the service provided or \npublicised so that it did not become overwhelmed. \n“We can't take self referrals at the moment. We want to but I don't think that we've got \nthe capacity” (an endometriosis nurse).  \nParticipants reported having boundaries around their role from expectations of colleagues. \n“you got to keep reminding him, I’m only here two days a week. And I’ve got, no one’s \nhelping me with admin.” (a PHWC) \nTheme F: Context  \nF.1 Tertiary care \nNot all health boards offer tertiary care and at least one does not have a district general hospital (DGH). \nThe ease of access to tertiary care (specialist multi-disciplinary hospital care) and secondary care (district \ngeneral hospital level care) differs and is a barrier to some participants.  \n“we're having an awful time trying to refer our patients that need tertiary care into \n[tertiary care in another health board]. [...] recently we've managed to get some funding \napproved […] to have, refer patients to [health board] […]But they've got their own long \nwaits” (an endometriosis nurse). \nParticipants working in a tertiary care centre report increased workloads as participants are expected to \noffer not just higher levels of care, but to patients from other health boards as well.  \n“We haven’t got the access and the time, the funded time to manage our patients. So \nwe’ve now got more coming from [health board], and then we got ours as well.” (an \nendometriosis nurse) \nHowever not working in a tertiary centre can limit access to other disciplines. \n“[health board X] and [health board Y] are tertiary centres so they have to have \nestablished MDTs as part of their accreditation and we don't have that, because we're \nnot an accredited centre” (an endometriois nurse) \nIt can be seen that the different levels of care create more health board differences (see theme A.5). \nOne participant explained that becoming a tertiary centre meant they would no longer need to reject \nreferrals from other health boards.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  34 \n“we can now open as a tertiary centre […] but obviously that’s going to take a lot of \nplanning now and managing the finance. […It’s been] The downside of my job, and the \nworst part of my job, is telling somebody they can’t be seen in [health board] because \nthey don’t live in [health board]” (a PHWC) \nF.3 Patient group \nParticipants empathised that many patients had been through a difficult journey, where healthcare \nprofessionals may not have listened to or even denied symptoms. Participants valued the time they \ncould give patients and worked with understanding to help overcome these issues, as well as support \nongoing symptoms whilst potentially on a very long waiting list.  \n“it's mainly pain. And emotional as well, how they're emotionally feeling, because it has \na massive impact on their psychological state too. You know, I have had patients that \nhave been suicidal because of the pain and we've had to get, like, the crisis team \ninvolved, because they really reached the end of their tether.” (an endometriosis nurse) \nParticipants explained that expectations from services can be inaccurate and patients could be \ndisappointed by the reality of what can be offered. Participants explained that they tried to be honest \nwith patients about how their illness or symptoms could be managed.   \n“so they don’t want to keep seeing me because they just want to wait for their surgery. \nSo that is really sad.  [Interviewer: What do you feel like they were looking for?] A magic \nwand. I do say to patients when they first come into their appointment, you know, I \nhaven’t got a magic wand. I’m not going to be able to solve everything, but I’m hoping \nthat we can, if we can just help some of your symptoms to give you a better quality of \nlife.” (an endometriosis nurse) \nA participant reported feeling that they had been subjected to abusive patient behaviours.  \n“I have had had a few abusive patients unfortunately and you get a few abusive texts \nand you've got no way of recording that. […] One of them was very serious threat, so it's \nactually stopped me from doing, like, some charity work and stuff like that because of it, \nbut, you know, you reflect and it was one person, which is horrible […] it's just cause \npatients are angry, because they've been waiting so long. I, you know, I, sort of, \nunderstand it, but it's not my fault as such, you know.” (an endometriosis nurse).  \nF.4 COVID  \nDuring the COVID pandemic many healthcare services were stopped and staff re-assigned to emergency \ncare and COVID-19 services. For services that stayed open or opened later in the pandemic some \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  35 \npatients were too scared to attend [13]. This upheaval in the settings and beyond effected these newly \ndeveloping women’s health services by disrupting the staff, but also engagement with the new service.  \n“before COVID we had a steering group and we had volunteer sector engagement. We \nhad a really strong focus group really going. And it just all disbanded. And it's really \ndisappointing” (a PHWC) \nParticipants explained a positive from the COVID epidemic in the acceptance and widespread use of \ntelephone and online appointments for healthcare which some participants use frequently – especially \nin rural areas. \nTheme G: Perceived Benefits of the roles  \nParticipants discussed the benefits they felt came from the roles. As well as overt discussion, some \nthemes were identified by researchers.  \nBenefits to patients, mainly from participants who were patient facing, stemmed from the time that \nthese roles allow with patients as well as the high levels of expertise. The perceived benefits included: \n• Reducing patient symptoms \n• Improving patient quality of life \n• Listening to patients often previously unheard journeys \n• Reducing waiting lists  \n• Advocating, teaching and collaborating with others, including other healthcare professionals \nabout their specialty and service.  \n• Improving their service \n“We identified through the gynaecology department that patients that lived in [town] were \ntravelling up to [hospital] to have their pessary changed. […] So we invited, we’ve got a practice \nnurse that runs a clinic on a Thursday with us and she sees all the pessary patients that live within \nthe [town] cluster.” (a PHWC) \nThere were also benefits to some of the participants themselves of being within these specialists roles. \n“I’m very passionate about what I do, and I love my job. I’m very lucky that I’ve got a job \nthat I love […] It’s the impact you have on patients. So it’s the difference that we can \nmake from an admin role” (a PHWC) \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  36 \nSome participants were able to share feedback they had received from patients. \n“a lot of them say it’s just nice to have somebody to talk to that understands what \nthey’re going through. […] it’s just nice to know that somebody understands what \nendometriosis is and that it’s not just painful periods. Because that’s what they’ve \nexperienced before.” (an endometriosis nurse) \n \n“thank you for validating how I'm feeling and being that link between the consultant and \nthe patient” (an endometriosis nurse) \nTheme H: Service development  \nParticipants discussed  previous service change and ideas they had for how their service could develop. \nThere was mixed confidence in future ideas being realised. Participants discussed being constrained by \nresources and colleague support, so would need investment to expand. There is hope from some that \nthe new Womens Health Plan [2] will support their services.  \n“the education within continence and pelvic health physios, they're doing their own \nwork, but that link with us all still needs to grow. And I think that will come with the \nWomen's Health Plan and the engagement from the All Wales level.” (a PHWC) \nH.1 Implemented or imminent changes  \nRoles have ‘evolved’ since forming. Some services have expanded or improved, with many wanting to do \nmore. One participant explained how they had improved the MDT and its attendance. In one health \nboard, PHWCs discussed substantial changes led by a consultant (as a service advocate: theme B.1) of \ncreating a centralised hub which had just become an Accredited Pelvic Floor Centre where services were \nrelocated, encouraging more interprofessional working. In this centre, there were also new staff, a new \npessary clinic, a ‘tailor made’ app to support patients and increased theatre time (through a business \ncase). The PHWC is now also involved in a support group for patients.  \nIn another health board the PHWC described expanding from one weekly consultant-led clinic to  \nmultiple nurse-led clinics in many sites, “I just developed it and just made a, I don’t know, a success, I \nhope I have anyway. I think I have.”  \nThere were discussions from some PHWCs of working to improve referral pathways, including single \npoint access and supporting patients accessing more conservative treatments while waiting for / instead \nof surgery, often following an audit. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  37 \n“early on into the audit, that was the biggest thing we picked up on: Let's get the patient \nto the right person, get the right care and then, surgery should always be the last port of \ncall.” (a PHWC) \nH.2 Ideas for future service improvements \nThere was discussion from one endometriosis service proposing a one-stop clinic for women, though the \nparticipant reflected that service fragility (theme A.6) would be an issue: \n“we'd like to set up, so, a one-stop nurse-led clinic, where the patient would come in, \nthey would have clinical history taken, any investigations needed. […] So, the result \nwould be given to that patient on that day. […] there'd be a plan of care at that \nappointment, which will reduce the footfall.” (an endometriosis nurse) \nThere is a plan in one pelvic health service to add another surgeon and create a Wales-wide service. \nH.3 Recommendations for the role \nImproved connections to primary care \nEndometriosis nurses in particular discussed reaching out to primary care and suggestions included: \n• Support network for healthcare professionals \n• Nurse-led endometriosis clinics within primary care clusters \n• A named GP within each health board to support the roles   \n“All Wales Network[…] accessible to primary care, secondary care, and everybody can \nfeed into it and seek advice from it and ask questions from it. It could be an open forum.” \n(an endometriosis nurse) \nIncreasing awareness of and access to services \nThe public could be made more aware of pelvic health and endometriosis services / diagnoses: \n• Signposting from other services  \n• Primary care promotions \n• Education or promotions in schools \n• Advertising and marketing around endometriosis and pelvic health \n• “more prompt and quick access to us.” (an endometriosis nurse) \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  38 \nImproved colleague support and staffing \n• Expanded MDT:“I would just love to have physio and admins” (an endometriosis nurse)  \n“psychological support.” (an endometriosis nurse)  \n• A virtual women’s heath hub  \n• More admin support. \n• Closer peer working: “working autonomously, but working within a team” (endometriosis nurse) \n• Closer working between the PHWC and endometriosis nurse roles  \n“there’s this massive overlap from the two services, and we should probably be one big \nservice, Pelvic Health Service, not endo services and urogynae” (a PHWC) \n• More PHWC and endometriosis staff which could then improve the referral pathway / support \nprimary care / allow for cover / expand services. “we need more endometriosis nurses.” (an \nendometriosis nurse) \nIncreased knowledge sharing  \n• Videos for patients. \n• Improving knowledge in primary care \n“I think presenting and sharing knowledge is something that the next step for them \n[others in the role] is that they need to be going out and doing.”(an endometriosis nurse) \nExpanding the role remit \nThere was some discussion that the roles could support women beyond pelvic health and \nendometriosis: “we want to expand, we wanna deliver as much as we can.” (a PHWC) \n“The plan, as far as I'm aware, is to expand to women's health services. So it would go on \nto develop into sort of like menstrual cycle problems, heavy periods, and then on to \nmenopause care as well. But we're not there yet.” (an endometriosis nurse) \n3.3 Workshop Results \nThis workshop has not been thematically analysed, but summarized below into key messages. \nKey difference to the interview data  \nParticipants were asked to reflect on four themes from the interviews (see appendix three) and there \nwas agreement (triangulation) that these themes remained important. However some discussion stood \nout as differing from the interview themes. There may have been a change since interview, or the \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  39 \nworkshop environment altered the discussion. In particular there was concern over increasingly difficult \npatient interactions, with some becoming aggressive. While participants understood the difficult time \npatients were going through and that they are ‘crying out for help’, the strain on participant’s own \nmental and physical health was too much and burnout was discussed. Some participants felt they could \nnot walk away from aggressive / abusive patients as they were the only person carrying out the service. \nSuggested ways forward \nParticipants discussed potential ways forward for the planned workshop themes, but also strayed onto \nother themes during the breakout session. These are summarised in figure five below.  \nResources: An understanding of the capacity and demand of these pelvic health and endometriosis \nservices could support requests for funding. Also suggested was understanding similar services as a \nbenchmark so that comparisons could be made of resource distribution.  \nRole clarity: Could be improved with detailed job descriptions. For PHWCs these may be different for \ndifferent role types (eg clinical, administrative, managerial or governance). Minimum job banding, \nclarification of placement (secondary or tertiary care) and expectation of time for tasks would be useful. \nPeer working such as a buddy system, Welsh network and WhatsApp group could support role clarity. \nClear outcomes, perhaps KPIs, could also increase role clarity.  \nSenior colleague support: Could be increased through service drivers such as KPIs as well as building \nlinks, for example regular meetings, with senior management. Participants felt they should be included \nin the Women’s Health Plan implementation or planning within their health board which could also \nsupport links with senior colleagues.  \nSupporting endometriosis nurse inductions: Participants reported supporting new starters but this \ncould be more uniform. New starters should be signposted to the RCN guidance document for \nendometriosis nurses. There could be more (or more formalised) sharing of documentation and norms \nof the role. Working with experienced endometriosis nurses is important, such as being mentored and \nobserving clinics. Succession planning is not currently resourced but is strongly reccomended by \nparticipants, it would also help overcome the fragility of the service.  \nBoundaries: More administrative support could help reduce workload and increase capacity. Discussion \nmoved into how to support staff in these roles in the reported increasing problems of aggressive / \nabusive patients. Suggestions included, having a plan decided and in place ready for any issues. \nColleague support is important in coping with this as people in these roles are often the only one \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  40 \nrunning a service and may feel they can not walk away from a difficult situation without support. One \nparticipant described that in case of an abusive interaction, she can leave the appointment and discuss \nthe case at an MDT after which the patient can be sent a treatment plan. This means she is empowered \nto keep safe whilst knowing the team can still provide care. \nFigure 5: Suggested ways forward for themes discussed at the workshop \n \n \n4.   Discussion \n \n4.1 Summary of findings \nOur in-depth qualitative study explored the lived experiences of people working as PHWCs and \nendometriosis nurses, and several factors that underpin the success of these roles. We also identified \nkey barriers to carrying out the roles successfully and priority areas for change and improvement. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  41 \nThis service evaluation revealed that key factors in the success of these roles included support and \nworking relationships from a supporting advocate to the MDT and senior leaders and primary care. \nParticipants bring their own experiences to the role which can add value in different ways. Participants \nalso create boundaries around their work or mental load to protect their wellbeing and / or service \nwhich, though not always stated overtly, was an important element of the role \nParticipants described barriers including their role description, especially its lack of clarity, with many \ndifferences across health boards. An outcome of this is that patients in health boards are likely receiving \ndifferent services or care from the PHWC (in some health boards PHWC roles are not patient facing (e.g. \nadministrative or governance roles). There can be difficulties getting started in the roles. \nResources and their availability effect the ability of participants and their service to carry out their core \nwork, develop or allow staff to reach their potential. Reach and inclusivity of the roles is not well \nunderstood and views vary on this indicator. Interviewers reflected that participants found reach a more \nchallenging question to answer and participants may have been more guarded in their response. Some \nparticipants felt that that self-referral routes for their services increased inclusivity but we are not able \nto understand from this service evaluation how well publicised, understood or easily found the self-\nreferral routes are.  \nThe workshop focused on the areas of role clarity, supporting new starters, colleague support, \nboundaries and resources. Key suggestions to support these roles moving forward (see figure five above \nand section 5 below) included: detailed job descriptions; improved peer working and resource sharing \nacross Wales; clear outcomes; links with senior leadership; induction pack for new starters; succession \nplanning; supporting boundaries, especially when dealing with abusive patients; more staff; \nadministrative support; capacity and demand research of these and similar services; more research of \nthe PHWC and endometriosis roles and to work more closely with consultants.  \n4.2  Our findings in relation to the Women’s Health Plan \nThe NHS Wales Womens Health Plan 2025-2035 [2] (WHP) aims to improve the health of women and \ngirls across their lifetime, highlighting opportunities to reduce the gender gap. it includes short, medium \nand long term actions in eight priority areas, including endometriosis (priority two) and pelvic health and \nincontinence (priority five). \nThe WHP acknowledges the progress made in recruiting pelvic health and wellbeing co-ordinators and \nendometriosis nurses in each health board as well as setting up the Endometriosis Cymru website. It also \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  42 \nacknowledges, as the participants in this study have raised “that there is more to do to improve access \nand reduce variation across Wales.” (Ministerial Foreword Page 6 [2]). \nAs experienced by participants in this study (resources theme D and patient group theme G.3) the WHP \nreflects there is a difficult journey for patients and “evidence about women’s symptoms being \nundervalued, overlooked or dismissed” (page 5, [2] ) before looking at how that can be improved.  \nThe WHP promotes evidence based healthcare and improved access to data for women in Wales. This \naligns with the workshop suggestion that there needs to be further research into the cost benefit of \nthese roles and of the capacity and demand of these services, in order to improve resource allocation.  \nEndometriosis and adenomyosis is priority area two within the WHP. The WHP recognises the \nimportance of the introduction of the endometriosis nurses in Wales (page 53 [2]) and their impact. The \naction plan for priority area two (endometriosis and adenomyosis) is summarised in table five with \nreflections from the service evaluation.  \nMany of the WHP priority two actions align with endometriosis nurses’ suggestions and themes. \nHowever, participants seem to be raising more concern than documented in the WHP over: \n• The fragility of the endometriosis service (only having one in post in most health boards, or per \nlarge geographical area).  \n• Lack of access to theatre for endometriosis patients creating long waiting lists.  \n• Rejection of referrals to allied healthcare professionals. \n• A potential lack of reach and inclusivity of the service, though this needs data to ascertain.  \nThe endometriosis nurse roles provide valuable time for patients to meet with passionate experts in \ntheir care, as stated at the start of the report: \n“health boards should ensure there are appropriate levels of diagnostic, therapeutic and \nsurgical capacity to enable women who require interventions for health needs specific to \nwomen and girls – including menstrual and fertility care, endometriosis and menopause \n– to receive care as close as possible to home without significant waits. (WHP page 6, \n[2])” \nPelvic Health and Incontinence is Priority area 5 within the WHP and so relates to the PHWC role. The \nWHP defines Pelvic floor dysfunction as: “an umbrella term encompassing a wide range of conditions in \nwhich the pelvic floor muscles around the bladder, anal canal, and vagina do not work properly. The \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  43 \nthree most common and definable symptoms of pelvic floor dysfunction are urinary incontinence, pelvic \norgan prolapse and faecal incontinence. However, others include emptying disorders of the bladder and \nbowel, sexual dysfunction and chronic pelvic pain.” ([2] page 64) and effecting 60% of UK women.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  44 \nTable 5: The WHP endometriosis and adenomyosis action plan with service evaluation findings –summarized from the WHP [2] page \n55 \nWHP Priority 2 Action summary Service evaluation findings  \nShort term: Develop and raise awareness of the Endometriosis Cymru \nwebsite to support patients and the public. \nBy: Women’s Health Network / Endometriosis CNS \nEndometriosis nurses discussed in interviews that they share the \nwebsite and other resources (theme A.1). \nShort term: Provide education and training to all healthcare \npractitioners on endometriosis and adenomyosis as chronic \nconditions. To ensure patients receive multi-professional care \nincluding access to adequate mental health support. By: HEIW \nEndometriosis nurse participants are trying or aspiring to educate \nGPs (theme B.5), but this plan places the onus solely on HEIW. In \ntheme B.3 Multidisciplinary working, some participants discussed a \nlack of counselling / psychology professionals to refer to.  \nShort term: Agree a robust monitoring framework including key \nperformance indicators and outcomes from national pathways. By: \nHealth Boards / NHS Wales Executive. \nThe workshop ways forward suggest outcomes such as KPIs to \nimprove role clarity (theme A.3) and the visibility of the role to \nsenior leaders, and improve engagement (theme B.1) for PHWCs, it \nis not clear if this would support endometriosis nurses.  \nMedium term: Sustainably fund and deliver a model for tertiary care \nprovision in Wales. By: JCC / Welsh Government \nCurrently some endometriosis nurses are providing tertiary care \nwithin their health board, secondary care and community care as \ndiscussed in theme G.1. This needs to be clarified (as discussed in \nthe workshop) and as stated in the action, resourced.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  45 \nMedium term: Develop an Endometriosis Clinical Reference Group, to \nsupport the delivery of national recommendations. By: Women’s \nHealth Network / Gynae CIN \nThis may particularly support the work of endometriosis nurses who \nhave less colleague support (theme B), as having support in their \nwork is vital. This could be particularly helpful if it feeds into senior \nmanagement (workshop suggestion improving links with senior \nleaders). \nMedium term: Undertake a demand and capacity modelling activity in \neach Health Board. By: Health Boards \nThis is suggested by participants at the workshop, and some are \nattempting this, to hopefully increase resources. Participants also \nproposed benchmarking similar services for context and comparison.  \nLong term: Scoping activity to understand the need for specialist \ncommunity-based endometriosis nurses.  \nParticipants are keen for more research and support of patients in \nthe community, but would need more resources.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  46 \nTable 6: The WHP pelvic health and incontinence action plan with service evaluation findings –summarized from the WHP [2] page 66 \nWHP Priority 5 Action summary Service evaluation findings  \nShort term: Provide access to evidence based high quality information \non pelvic health and perinatal health (inc. videos), via an NHS Wales \nwomen’s health website. By: Women’s Health Network /NHS Wales \nExecutive / PHW  \nThere was discussion that participants would want to be \nresourced to increase knowledge sharing such videos (theme \nH.3).  \nShort term: Services to benchmark against national standards and \nguidelines and T&F Group recommendations with annual reporting. By: \nHealth Boards \nThere are requests from some participants for outcomes to \nsupport the PHWC role (themes A.3 and workshop findings). It \nmay support the PHWC roles to assign where they are \nresponsible.  \nShort term: Review workforce to ensure integrated pelvic health \nservices include members of the multi-professional teams including \npsychological support. By: Health Boards \nWorking closely with / managing MDT’s is vital to most PHWCs \nrole. Psychological support was sometimes discussed as missing, \nas were other healthcare professionals seen as vital to the \npatient’s treatment. (Theme B.3) \nMedium term: Engage with academic institutions to highlight key \nevidence gaps and opportunities for new research. By: Women’s Health \nNetwork / Universities / HCRW \nSome participants discussed research projects they would be \ninterested in but do not have capacity (themes A.7 and D.4). \nWorkshop suggestions included more research on the roles.  \nMedium term: Develop a ‘pelvic floor dysfunction symptom checker’ \nthat enables early signposting to appropriate services and information, \nand forms part of a self-referral system across Wales including Patient \nSome participants suggest outcome measures to improve role \nclarity and visibility of the role to senior leaders, and improve \ntheir engagement. Self-referral was discussed as supporting \nequality (theme C) but there is concern over capacity of the \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  47 \nReported Experience and Outcome Measures (PREMS/ PROMS). By: \nGCIN / Women’s Health Network \nservice (theme A.7) to either accept an influx of self-referrals or \nto collect / analyse more data (theme C).  \nMedium term: Undertake a scoping exercise on the potential of primary \ncare based 'pelvic floor dysfunction teams'. By: Welsh Government / \nWomen’s Health Network / HEIW \nThis was not discussed in the service evaluation.  \nMedium term: Hold national ‘pelvic floor dysfunction’ events to \nimprove peer to peer support and training. By: GCIN / Women’s Health \nNetwork \nParticipants are keen to support learning (theme H.3)  \nLong term: Report data from an ‘All-Wales Pathway for Pelvic Floor \nDysfunction’ with agreed KPIs (i.e. referral to treatment (RTT) / did not \nattend / demand and capacity), including analytics from national \npathways. By: NHS Wales Executive \nThe workshop suggest outcome measures, particularly KPIs to \nimprove role clarity and the visibility of the role to senior leaders, \nand improve their engagement (themes A.3 and B.1). However \nPHWCs would need to know what they are and given the broad \nrange of PHWC roles they may not all be able to contribute to the \nsame KPIs (themes A.2 and A.3). \nThis priority five action plan is not as closely aligned to the PHWC roles. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  48 \n4.3 Strengths and limitations \nStrengths  \nA key strength of this service evaluation was the successful recruitment of all eligible participants for \ninterviews. This gave the maximal insights into the roles being evaluated. Additionally, there was strong \nengagement at the workshop, with high attendance and active, thoughtful contributions from \nparticipants. These high levels of engagement were largely due to the willingness of individuals in these \nroles to share their experiences and contribute to improving the service. \nLimitations  \nThe data presented here is not generalisable beyond this specific context. They reflect the perspectives \nof individuals in particular roles within Wales at a specific point in time, which is consistent with the \nnature of a service evaluation. While some of the lessons learned may be transferable to other roles or \nsettings, they should be interpreted with caution. This service evaluation also only shows one \nperspective: of those in the role. This is an important perspective but does not give the entire picture of \nthe PHWC and endometriosis nurse services, where patient perspectives really supplement the narrative \nas well as those who refer to, take referrals from, line manage, and oversee the roles.  \n \n4.4 Conclusions \nParticipants in these highly specialist roles demonstrated strong commitment and passion for their \nwork, despite facing a number of barriers to effective delivery. They also identified key facilitators that \nsupported their roles—most notably, the support and collaboration of colleagues. \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  49 \n5. Implications for practice and policy \nAs well as suggestions from the workshop (section 3.3), there are interview and researcher team suggestions of how the PHWC and \nendometriosis nurse roles could be supported, and outlined in table 6:  \nTable 7: Suggested potential improvements to the PHWC and endometriosis nurse roles  \nSuggested Improvement to the Role(s) Reason for suggestion Source \nMore resources: Theatre time for endometriosis and pelvic health \npatients; more staff; administrative support.  \nReduction in waiting lists from increased theatre time \nwould support patients, the service and staff \nexperience. Increased staffing and administration \nsupport would increase capacity and cover of staff and \nthe service for their primary responsibilities. It could \nimprove service reach. \nWorkshop, \ninterviews \nDetailed job descriptions including: expected time for different \ntasks, minimum banding, distinguish different sub-roles, e.g. tertiary \nendometriosis nurses and different PHWC roles. \nImprove role clarity and support boundaries.  Workshop \nImproved peer working across Wales. Could include: (1) WhatsApp \ngroup, quickly adding new starters. (2) Regular online meetings with \na specific learning focus. With either a single or rotating lead to \norganise each meeting. (3) Co-operative online space for resources \nincluding funding ideas. (4) Learning collaborative.  \nImprove role clarity, support for new starters, improved \nsupport, opportunities for learning and sharing funding \nideas for more potential resources.  \nWorkshop, \nInterviews \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  50 \nIntroduction of outcome measurements such as KPIs. With flexibility \nfor the variety of PHWCs who may need differing outcomes. This is \nparticularly important for the PHWC role.  \nEncourage senior health board engagement. \nImprove role clarity. \nWorkshop, \ninterviews \nCapacity and demand evaluations: Also benchmarking similar \nservices. \nTo support bids or business cases for more resources. Workshop \nPlan in place in case of an abusive patient as participants report an \nincrease in cases. Some did not have a plan and some single \nproviders of a service felt unable to respond. \nStaff in these roles need to be able to identify when a \npatient has become abusive and know what to do, with \ncolleague support, in advance, for their safety.  \nWorkshop \nNew starter endometriosis nurse induction pack. Including links to \nshared resources, RCN guidance document, Fair Treatment For \nWomen in Wales (FTWW) endometriosis nurse patient-led toolkit,  \nideas for how to get started (e.g. observations of clinics etc.). Also \ncould be considered: (1) a tool to recognise readiness to start \nindependent clinics (2) create a simple training video (3) assigning a \nmentor.   \nTo support new starter nurses to begin their \npreparation more quickly. \nEncourage peer working from the start of the role \nDeveloped \nfrom the \nworkshop \nAcceptance of referrals by other healthcare professionals Improved MDT working   \nInclusion in the planning, implementation and evaluation of the \nWomen’s Health Plan (WHP). \nEncourage senior colleague support and role visibility \nSupport service change through the WHP \nWorkshop \nImproved primary care relations such as through a named GP \ncontact, perhaps a designated GP Cluster lead for each health board. \nImproved colleague support Interviews \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \nPR0031. Women’s Health Service Evaluation. September 2025.  51 \nGuidance for the endometriosis nurse voicemail / inbox to support \nstaff to make boundaries.  \nImprove staff understanding of boundaries around this \ntask to support their own capacity \nResearcher,  \ninterviews \nTraining for staff in self-management support: when a healthcare \nprofessional supports a patient with feeling more competent in \nmanaging their life with illness[14].  \nThis may support staff confidence, empower patients. It \nmay improve capacity as empowered patients may be \nless reliant on their healthcare professional. \nResearcher \nPromotion of the pelvic health and endometriosis nurse services \nonce there is capacity. Such as education in schools, signposting \nfrom other services and advertising. \nThis would improve reach of the service though care \nmust be taken that any inequalities are not \nexacerbated.  \nInterviews \nSuccession planning  Having a plan for training the next person for the role \ncould ease pressure on those in the role. A person in \ntraining may be able to partly cover for the lead staff \nmember during periods of leave.   \nWorkshop \nSupport with funding Support with funding sources and applications may \nsupport their work, though capacity will be an issue.  \nInterviews. \nAddition of necessary staff to the MDT to support the work of the \npelvic / endometriosis service, such as psychological support, pain \nteam where needed. \nThis would improve the support for patients and staff.  Interviews \nImproved senior colleague support such as closer working with \nconsultants and senior management \nThis could improve role visibility, impact of the role \nand clarify messaging to patients.  \nInterviews, \nworkshop.  \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  52 \n6. References \n1. Welsh Government, New endometriosis nurses to improve awareness and \ndiagnosis in Wales, in Specialist endometriosis nurses have been appointed in \neach Health Board in Wales to improve services for the chronic condition which \naffects one in ten women. 2022, \"Welsh Government\": https://www.gov.wales/. \n2. NHS Wales Executive, The NHS Wales Women's Health Plan , N.S.C.N.f.W.s. \nHealth, Editor. 2024, NHS Wales: https://executive.nhs.wales/functions/networks -\nand-planning/womens-health/the-womens-health-plan-for-wales/. \n3. National Institute for Health and Care Excellence (NICE). Endometriosis: What is \nit? Health Topics A to Z 2024 July 2024 [cited 2024 28/10]; Available from: \nhttps://cks.nice.org.uk/topics/endometriosis/background -information/definition/. \n4. NHS. Endometriosis. Health A to Z 2024  [cited 2024 11/11/2024]; Available \nfrom: https://www.nhs.uk/conditions/endometriosis/ . \n5. Welsh Task and Finish Group, C.P.S.E., Report of the Welsh Task and Finish \nGroup to Review the Use of Vaginal Synthetic Mesh Tape and Sheets for Stress \nUrinary Incontinence and Pelvic Organ Prolapse . 2018, Welsh Government: \nwww.gov.wales.uk. \n6. Sekhon, M., M. Cartwright, and J.J. Francis, Acceptability of healthcare \ninterventions: an overview of reviews and development of a theoretical \nframework. BMC Health Services Research, 2017. 17(1): p. 88. \n7. Proctor, E., et al., Outcomes for implementation research: conceptual \ndistinctions, measurement challenges, and research agenda.  Adm Policy Ment \nHealth, 2011. 38(2): p. 65-76. \n8. Braun, V. and V. Clarke, Using thematic analysis in psychology.  Qualitative \nResearch in Psychology, 2006. 3(2): p. 77-101. \n9. Graham Moore, S.A., Mary Barker, Lyndal Bond, Chris Bonell, Wendy \nHardeman, Laurence Moore, Alicia O’Cathain, Tannaze Tinati, Danny Wight, \nJanis Baird,, Process evaluation of complex interventions: full MRC \nguidance, ed. Medical Research Council. 2015: UK Research and Innovation,.  \n10. Endometriosis Cymru. Endometriosis Cymru.  [cited 2025 12/08/25]; Available \nfrom: https://endometriosis.cymru/. \n11. Endometriosis Cymru. The Endometriosis Cymru Symptom Reporting Tool . \n2025; Available from: https://endometriosis.cymru/estr/. \n12. Endometriosis UK, Endometriosis UK. 2025. \n13. Haileamlak, A., The impact of COVID-19 on health and health systems.  Ethiop J \nHealth Sci, 2021. 31(6): p. 1073-1074. \n14. Duprez, V., et al., Self-Determination Theory to observe healthcare professionals’ \ncounselling in chronic care encounters: Development of the COUNSEL -CCE tool. \nPatient Education and Counseling, 2021. 104(7): p. 1773-1780. \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  53 \n7. Acknowledgements \nThe authors would like to thank the endometriosis nurse and pelvic health  and wellbeing \ncoordinators who participated in the interviews and workshop for this service evaluation  \nwho gave their time and experiences so graciously.  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  54 \n8. APPENDIX \nList of Appendices \n \nAppendix 1 Interview Schedule \nAppendix 2 Interview consent \nAppendix 3 Workshop facilitator guide \nAppendix 4 Workshop invite \n  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  55 \nAppendix 1 – Interview schedule  \nDraft Interview Guide – 0031 Women’s Health Services  \nThe guide has been underpinned by the Implementation Outcomes Framework and the \nMRC Process Evaluation Framework.  \nIt is semi-structured so will be used differently for each participant. It is also iterative and \nwill be reviewed throughout the study.  \n \nIntroduction:  \n1. Introduce yourself, thank participant, explain where you are calling from. Confirm time \nparticipant needs to finish by.  \n \n2. Set the focus of the interview/ Study description: \nI am working in the Health and Care Research Wales Evidence Centre. We are currently \nspeaking to Pelvic Health Co-ordinators and Endometriosis Nurses across Wales to see how \nthese relatively new services are running, what is going well and what barriers are being \nfaced. We hope this may be an opportunity to enhance the services by continuing to \nimprove and learn from each other as well as support other women's health services in \nWales. We are keen to hear directly from you, the nurse (or co-ordinator), as we really value \nyour experience and knowledge from doing the work. I would like to reassure you, there is \nno need to worry as there are no right or wrong answers and the outcome will not be used \nagainst you in anyway. This is a safe space.  \n \n3. Check understanding and answer any questions. \nDoes that make sense? Do have any questions about the study or about why I’m speaking to \nyou today? \n4. Consent discussion \nI can see you have completed the electronic consent form (X days ago). Are you happy you \nunderstood the form? [answer any queries]  I just want to remind you that we can stop \nwhenever you like, if you want a break or if you want to completely stop the interview that \nis fine. We will be recording but I will let you know when that starts. Just because you have \nsigned the consent form does not mean you have to finish if you do not want to, so please \ndo let me know if you change your mind.  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nSignposting in case the participant becomes distressed during interview \n \nAdvice to contact their GP in the first instance \n \nCanopi offers a free and confidential mental health support service for social care and NHS \nstaff in Wales aged 18 years and over. Offer various levels of mental health support including: \nSelf-help; Support from Wellbeing Allies; Guided self-help; Virtual and face-to-face therapies \nwith accredited specialists. 0800 058 2738.     https://canopi.nhs.wales/contact-us/ \n \nHealthcare workers foundation: charity founded by healthcare workers, for healthcare \nworkers, to address crucial welfare and wellbeing needs. Provide help in the form of financial \nsupport, counselling and bereaved family support. 0203 576 0374 \nhttps://healthcareworkersfoundation.org/ \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  56 \n \nI will now be starting the recording. START RECORDING \n1. About your role    \n1. Tell me about your role. \na. Can you explain your day-today activities in work?  \nb. Can you tell me about the aims of your role?  \nc. How do you feel about the role?  \nd.  Do you have another NHS role? How does this work? \n \n2. How did you prepare for this role?  \na. Prompt: did you do any specific training /mentoring/previous work \nexperience? \n \n3. Can you tell me about the support you are given in your role?  \na. Prompts: Patient, clinician, team, other staff, administrative, organisation, \nstructural, policy, attitude of people around you, training, supervisor. \n \n4. We are trying to understand how the system works, what happens after you have \nseen a patient? \na. Talk me through the onwards referral process if they are needed.  \nb. Do you need to refer back to a GP or directly refer on to appropriate teams? \n2. Working with others \n1. Do you work alongside other practitioners as part of this service?  \na. How do you work together to achieve the aims of your service? \n \n2. How would you describe the attitudes of your colleagues (and the organisation)    \ntowards your role? \n \n3. What are your colleagues (and the organisation’s) expectations of your role?   \na. How do you feel about that? \n3. Patient Experience  \n1. Do you feel that the right patients are being reached? \na. How are patients identified or referred?  \nb. How could this be improved? Has it been already? \n \n2. Do you think your role has had an impact on your patients?   \na. What makes you think this? \nb. Do you feel you are seeing people from different backgrounds?  \nc. Do you think they are benefitting equally?   \n \n3. Do you feel your role meets the needs of your patients?  \na. How could that be improved?  \nb. What (if anything) have you changed to support them?  \n \n4. Have you had any patient feedback relating to the service?  Both Positive & neg  \n \n5.  What else do you think patients want from the service? \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  57 \n \n \n \n \n  \nDraft Interview Guide – 0031 Women’s Health Services  \n1.  As far as you are able to say, are patients able to contact the service in the way they \nwant to, at the time they want to? \n \n2. Do you feel there have been any unintended consequences of your role?  \n3. Changes to the role \n1. Has your role evolved since starting ? How?  Why?  \na. Explore why: improvements vs barriers  \nb. If no: Do you think your role needs to or should change? \n \n2. Have you found anything you think could be improved for your role?  \n \n3. Has anything hindered (or acted as barriers) your being able to carry out your role as \nintended? (patient, clinician, team, organisation, structural, policy) \n \n4. If you have experienced any support/barriers, have there been any differences \nacross different people or settings you are based in?  \na. What do you think might have contributed to this? E.g. attitudes, roles, \ninstitutional factors? \n5. Recommendations \n1. What would be your key recommendations for how your role could improve? \n \n2. What has worked well in your role? Why?  \n \n3. What have been the most significant challenges?  \na. How could/have these be overcome? \n \n4. Since your role has started, what do you think has been the most significant change? \n \nEND: Thank you for your time today \nI am going to turn the recorder off, please stay for a moment. \n \nRECORDER OFF \nDebrief participant unrecorded \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  58 \nAppendix 2 – Interview consent form \n \n  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  59 \n \n  \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  60 \nAppendix 3 – Workshop Breakout rooms Facilitator Guide \n \n \n \nPelvic Health Wellbeing Coordinator Room topics: Facilitator: DW and EC \n1) Role clarity and service variation: the co-ordinator role is really varied \na) Are sub-roles helpful to clarify the role further? Such as those considered in this \nevaluation (eg, clinical, administrative, managerial and governance). \nb) What else may be helpful? For those in role and working with colleagues to define \nthe role so that people understand it.  \nc) What are the must-haves for the role? What is the warranted variation? \n \n2) Resources and finance often restrict the work, particularly administrative support: \na) There are other potential sources of funding, eg health board, what support is \nneeded to apply for and potentially capture these?  \nb) How do you look for finance support? \n \n3) Colleague Support:  \na) How can we improve relationships with or expectations from colleagues? \ni) This includes other healthcare professionals within the setting, or others in the \nsame role across Wales, line managers or seniors within trusts. \nb) How can those who may not have a person working with them that can help drive \nchange be better supported? \nc) What supports MDT working? \n \n4) Boundaries at work: \na) How can useful boundaries at work be developed? \nb) What do pelvic health wellbeing coordinators need to be able to create boundaries \nthat enable their work while being flexible for the needs of the health board? \n \nEndometriosis Nurse Room topics: Facilitator: AC and NR \n1. How can we support new starter endometriosis nurses? \na. Would a guidance document help? How could it be generated and what \ncould it include? \nb. How could a new starter know when they are ready to go, for example to run \nclinics? \n \n2. Colleague Support:  \na. How can we improve relationships with, or expectations from colleagues? \nb. How can we support those who may not have a person working with them \nthat can help drive change? \nc. Could there be a potential for international or national connections such as a \nlearning collective which brings together people interested in endometriosis, \nto share learning, links, resources etc.   \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  61 \n \n \n \n \n \n \n \n \nAppendix 4 – Workshop invite \nDear [name] \nWe are pleased to invite you to an online workshop for the Womens Health: Endometriosis \nNurses and Pelvic Health and Wellbeing Coordinators Service Evaluation on Tuesday 24th June \nat 12:00 - 13:30pm. \nWe have planned it over lunch time in the hopes that it will make it easier for you to attend. \nDuring the workshop, we will summarise findings to date and get your insight into the \nimplications for policy and practice going forward.  \nYou will shortly receive a calendar invite - please RSVP to the calendar invite so we know who \nto expect and so you receive the placeholder in your calendar. \nWe do hope you can join us. Further information about the workshop is below, but please do let \nus know if you have any questions.  \nBest wishes \nElly Clarke \n \nMore detailed information about the workshop: \nWhat will happen at the workshop? \nThe Evidence Centre team will present the findings from interviews with pelvic health and \nwellbeing coordinators and endometriosis nurses, highlighting the key themes. We will then \n1. Boundaries at work: \na. How can we support each other in creating useful boundaries at work? \nb. There was a lot of discussion of the open access email inbox or call lines for \nendometriosis nurses as creating a lot of work that could be overwhelming, \ncreating boundaries around this may be a way of supporting a sustainable \nway forward. What kind of boundaries could support this ongoing patient \naccess?  \n \n2. Resources and finance often restrict the work, particularly administrative support: \na. There are other potential sources of funding, eg health board, what support \nis needed to apply for and potentially capture these?  \nb. How do you look for finance support? \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  62 \nbreak into groups to discuss potential solutions and ways forward on selected implications for \npolicy and practice. \nDo I have to come? \nYou do not have to come. We know from speaking to participants at interview that a lot of you \nwould like to come. If it works with your schedule and we would like to hear from you, but there \nis no pressure at all to attend.  \nWill it be anonymous? \nYou will be discussing your view with other participants during the workshop. However, your \ncontributions will remain anonymous in our reporting. We would like people who attend to have \ntheir cameras on, as that helps us to converse and see when people are talking. At the start of \nthe session we will set the expectation that we will not discuss the content of the workshop \noutside of the workshop. When we put any results of the workshop into the report we will not \nuse names or identifying information. \nHow will the workshop be used for the project? \nWe plan to use the workshop to refine our policy and practice implications, which will be based \non the themes of the interviews with endometriosis nurses and pelvic health and wellbeing \ncoordinators. We plan to record the workshop, so that we do not have to take full notes and can \nlisten to you. This will help us in case we need to go back to the recording to check anything. We \nmay use anonymous quotes (that do not identify the speakers) from the workshop to describe \nthe policy implications and potential ways forward. \nWho else will be there? \nWe are currently finalising who would best be invited to the workshop, but we will are inviting \npelvic health and wellbeing coordinators, endometriosis nurses, public partners (including Fair \nTreatment for Women in Wales) and representatives from Welsh government who are \nstakeholders in the work.  \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint \n\n \n \nPR0031. Women’s Health Service Evaluation. September 2025.  63 \n \n \n . CC-BY-ND 4.0 International licenseIt is made available under a \nperpetuity. \n is the author/funder, who has granted medRxiv a license to display the preprint in(which was not certified by peer review)preprint \nThe copyright holder for thisthis version posted January 6, 2026. ; https://doi.org/10.64898/2026.01.05.25341955doi: medRxiv preprint","source_license":"CC0","license_restricted":false}