The acceptability, adaptations, reach, barriers and enablers to the roles of endometriosis nurses and pelvic health & wellbeing coordinators in the Welsh Health Boards: a service evaluation by qualitative methods

Endometriosis Nurse and Pelvic Health and Wellbeing Co-ordinator (PHWC) roles were introduced in each health board across Wales in early 2020. They were established to improve endometriosis and pelvic health care, as women can face severe problems and with major impacts across their quality of life, requiring expert care. How these staff roles have been incorporated into each health board has differed according to local need and as such, is not fully understood, nor are the benefits of the role as perceived by staff. The aim of this service evaluation is to explore the views and experiences of endometriosis nurses and PHWCs on those roles and services. Mixed qualitative methods were applied (interviews and workshop) between January 2025 and June 2025 to explore the study objectives. Interview data were thematically analysed to identify key themes. Workshop data were reported. The Cardiff University School of Medicine Research Ethics Committee waived the requirement for ethical approval as the project was found to be a service evaluation. The roles are important to health boards and post-holders with discussion of positive impact on patients across the health boards. Key factors in the success or limitation of these roles include: At the macro-levelAvailability of resources for staffing, training, administration, clinics and theatre time. Service fragility: The services, particularly endometriosis, rely on usually one person per health board and so cease during leave or recruitment, with no succession planning. At the meso-levelColleague, peer and other healthcare professional support. At the micro-levelClarity of role description and establishing boundaries of the service. Support and guidance for new endometriosis nurses. Funding StatementThe Health and Care Research Wales Evidence Centre is funded by Health and Care Research Wales on behalf of Welsh Government. Executive SummaryO_ST_ABSBackgroundC_ST_ABSEndometriosis Nurse and Pelvic Health and Wellbeing Co-ordinator (PHWC) roles were introduced in each health board across Wales in early 2020. They were established to improve endometriosis and pelvic health care, as women can face severe problems and with major impacts across their quality of life, requiring expert care. How these staff roles have been incorporated into each health board has differed according to local need and as such, is not fully understood, nor are the benefits of the role as perceived by staff. The aim of this service evaluation is to explore the views and experiences of endometriosis nurses and PHWCs on those roles and services. MethodsMixed qualitative methods were applied (interviews and workshop) between January 2025 and June 2025 to explore the study objectives. Interview data were thematically analysed to identify key themes. Workshop data were reported. Key FindingsThe roles are important to health boards and post-holders with discussion of positive impact on patients across the health boards. Key factors in the success or limitation of these roles include: O_LIAt the macro-level: O_LIAvailability of resources for staffing, training, administration, clinics and theatre time C_LIO_LIService fragility: The services, particularly endometriosis, rely on usually one person per health board and so cease during leave or recruitment, with no succession planning C_LI C_LIO_LIAt the meso-level: Colleague, peer and other healthcare professional support C_LIO_LIAt the micro-level: O_LIClarity of role description and establishing boundaries of the service C_LIO_LISupport and guidance for new endometriosis nurses C_LI C_LI Key PrioritiesKey priorities that could support the endometriosis nurse and pelvic health wellbeing coordinator roles are summarised in figure one below. These are summarised from table seven (section five). O_FIG O_LINKSMALLFIG WIDTH=200 HEIGHT=128 SRC="FIGDIR/small/25341955v1_fig1.gif" ALT="Figure 1"> View larger version (32K): org.highwire.dtl.DTLVardef@13500b1org.highwire.dtl.DTLVardef@c09652org.highwire.dtl.DTLVardef@1cd1217org.highwire.dtl.DTLVardef@5ebf99_HPS_FORMAT_FIGEXP M_FIG O_FLOATNOFigure one:C_FLOATNO Summary of what could be done to support the endometriosis nurse and / or pelvic health wellbeing coordinator roles C_FIG O_TBL View this table: org.highwire.dtl.DTLVardef@74eb8aorg.highwire.dtl.DTLVardef@13cae7org.highwire.dtl.DTLVardef@16e1111org.highwire.dtl.DTLVardef@12277edorg.highwire.dtl.DTLVardef@1ef757f_HPS_FORMAT_FIGEXP M_TBL O_FLOATNOTable 7:C_FLOATNO O_TABLECAPTIONSuggested potential improvements to the PHWC and endometriosis nurse roles C_TABLECAPTION C_TBL