REF2021 03Z_ICS_A: Effecting Endometriosis Policy and Clinical Guidance, Tackling Menstruation Taboos

    Impact: Health impacts, Public Policy or Services impacts, Quality of life impacts

    Description of impact

    Birmingham City University’s endometriosis research shapes national and international clinical health guidelines and policy. The first-ever (2017) NICE guidance on endometriosis cites, and gives commendation to, BCU research to improve care for the estimated 1.5 million women in the UK with the condition. The (2017) All Party Parliamentary Group Women’s Health Inquiry, citing numerous BCU studies, led to new endometriosis training from professional bodies (Royal College for Obstetricians and Gynaecologists and Royal College of General Practitioners) and mandatory menstruation education for 7.25 million pupils in England. BCU research informed wider societal conversations about endometriosis, tackling taboos that surround menstruation.

    Details of Impact
    BCU’s social research on endometriosis was pivotal in informing new policy and clinical guidance for the estimated 10% of all women in the UK and Europe living with the condition. This research also shaped wider culture conversations in UK schools, parliament and media surrounding endometriosis awareness and menstruation stigma.

    Shaping Clinical Guidance and Informing Policy

    Denny’s research informed the first-ever national clinical guidelines on endometriosis, the (2017) NICE guidance (NG73) Endometriosis: Diagnosis and Management. The NG73 cites R01-R05 in guidance on information and support provision for women, their partners and family [S01: p. 65-92]. Such provision, according to the NG73, is key to improving women’s “quality-of-life and positively affects relationships between healthcare professionals and [women] with endometriosis, as well as [women’s] personal family relationships” [S01: p. 91].

    The NG73 gives special commendation to BCU’s Endocul project [R04], stating that it “highlights that services for minority ethnic women with endometriosis could be improved. It was therefore agreed that this was an important point to highlight in the recommendation” [S01: p. 90]. Thus, the guidance now advises women’s cultural backgrounds are considered in practitioners’ assessments of women’s information and support needs. The Endometriosis SHE Trust Chair and Endometriosis UK’s Board of Trustee member, who served during the creation of the NG73, states “Professor Denny’s research on women’s experiences of endometriosis symptoms, including pain and dyspareunia, and recent research on couple’s experiences of the condition, informed NG73 guidance on endometriosis information and support provision for women, their partners and family members. Additionally, Professor Denny’s Endocul project informed NG73 recognition of the need to improve services for minority ethnic women living with the condition” [S02]. NG73 guidelines improve treatment and management of this disease for the estimated 1.5 million women in the UK with endometriosis [ibid.].

    Denny’s research informed international endometriosis clinical guidance, the (2013) European Society of Human Reproduction and Embryology’s (ESHRE) Guidelines on the Management of Women with Endometriosis. Citing R01, R03, R05, the guidance recommended developing “patient-centred self-management interventions, with a psychosocial element and a multidisciplinary approach, to enable women with endometriosis to more effectively manage the condition and the impact it has upon their daily lives” [S03: p. 28].

    BCU research [R01, R04, R05 and additional studies by Denny] informed the (2017) APPG Women’s Health Inquiry, Informed Choice? Giving Women Control of Their Healthcare [S04]. Citing much of Denny’s research, the report highlighted the routine dismissal of endometriosis as ‘normal period pain’ and recommended the Royal College of General Practitioners (RCGP) and the Royal College for Obstetricians and Gynaecologists (RCOG) introduce new education modules on recognising and treating the condition [S04: p5]. The Women’s Health APPG Secretariat states that “the report drew upon a number of endometriosis studies carried out by Professor Denny” and led to a “spotlight on endometriosis,” raising awareness about the condition “with health care professionals and the general public to ensure women can access better diagnosis and treatment options across the country” [S05]. The Secretariat further confirms the Inquiry, drawing on Denny’s research, led to the RCGP introducing an accredited e-learning module to promote awareness of endometriosis symptoms and the RCOG creating a core knowledge tutorial on pelvic pain and endometriosis for practitioners within and outside of the UK [S05]. The modules are based on the NG73 [S01] and ESHRE endometriosis guidelines [S03], which as established above, are informed by BCU research [R01-R05].

    Informing Conversations and Improving Menstruation Education

    The (2017) APPG Women’s Health Inquiry cited numerous studies by Denny, as demonstrated above, to call for school curriculum that includes education about “normal and abnormal menstruation” to help girls and young women “recognise when they need to seek help with symptoms” [S04: p30]. The Women’s Health APPG Secretariat confirms [S05] this recommendation led to Department for Education introduction of Relationships and Sex Education and Health Education that, for the first time, included mandatory menstruation education [S06]. The curriculum guidance, made compulsory from September 2020 for female and male (where appropriate) primary and secondary students in England, ensures approximately 7.25 million pupils will “be taught key facts about the menstrual cycle including what is an average period” [S06: p 31].

    Based on BCU’s reputation for social research on endometriosis and menstrual health, Brook, the sexual health service and education charity for young people, and Plan International UK, the international children’s charity, commissioned Weckesser and colleagues to create a series of evidence-based resources for the Let’s Talk. Period initiative. These resources [S07] provide a ‘go to guide’ for the menstrual health sector, informing Brook’s and Plan International UK’s national programme with secondary schools and colleges across the UK.

    BCU research informs wider public and cultural conversations regarding endometriosis awareness and menstruation stigma. Research by Denny and Weckesser features in multiple articles on endometriosis by high profile media outlets with large national and international readership, including The Independent, The New Statesmen, and The Daily Express [S08]. This research [R6] and its media coverage were included in the 2019 parliamentary debate on Endometriosis Workplace Support (CPD-2019-0228) [S09: p 6]. To meet the demand for and further these public conversations, Weckesser founded The VQ Collective, a women’s health public engagement initiative. The VQ collective provides ongoing public engagement events [S10] (including pop up shops with UK-based period pants companies and educators WUKA and Precious Stars, Pint of Science public talks, and University of Oxford podcasts) to tackle the taboos that continue to surround menstrual health and women’s sexual and reproductive health generally.
    Impact date20132020
    Category of impactHealth impacts, Public Policy or Services impacts, Quality of life impacts