Written evidence from Besins Healthcare UK [WRH0052]

 

Introduction

 

Terms of reference

 

Introduction to Endometriosis

 

The Committee has already cited in your call for evidence that in the UK Government Women’s Health Strategy call for evidence public survey, access to information was found to be a key issue. Only 8% of respondents felt they had access to enough information on gynaecological conditions. Women also said that they often had to speak to multiple doctors over several months to receive a diagnosis. When it comes to endometriosis diagnosis, 58% of women visit their GP more than 10 times with symptoms before they are diagnosed.6

 

Scope: The Committee invited written evidence on the following questions:

 

Besin Healthcare UK’s submission to Call for Evidence

 

Q1. What constitutes healthy periods and reproductive health?

 

 

Q2. What are women’s experiences of being diagnosed with, undergoing procedures, and being treated for gynaecological or urogynaecological conditions.

 

 

 

 

 

Endometriosis and impact on Quality of Life (QoL)

 

Economic burden

Diagnostic delay

 

Impact on fertility

 

Importance of early diagnosis and early intervention

 

 

Need for improved education of healthcare professionals (HCPs) and potential use of better diagnostic tools.

 

Q3. What disparities exist in the treatment and diagnosis of gynaecological or urogynaecological conditions?

 

Disparity in access to Endometriosis Centres and more complex clinical pathway

 

 

Disparities in experience of endometriosis diagnosis

 

 

Disparities in management in both primary and secondary care

 

 

We believe that reform of endometriosis care is currently long overdue. This could be achieved by elevating endometriosis care transformation as a critical performance indicator of the Women’s Health Strategy. Things that need to be addressed are:

Disparities across socio-economic status and ethnicities

 

Q4. What barriers exist in the treatment and diagnosis of gynaecological or urogynaecological conditions.

 

Lack of prioritisation of endometriosis and women’s health within NHS care

 

Lack of multidisciplinary care in endometriosis

 

Lack of research and innovation in endometriosis

 

Lack of medical education of HCPs and general public about endometriosis

 

Lack of specialised providers and need for multidiscipline care.

 

Concerns regarding invasive diagnosis

 

Barrier of stigma and gender bias in delivery of care

 

Barrier of limited research and funding

 

Cultural and language barriers

 

Barriers/lack of access to increased access via telemedicine and digital health access

Conclusions

 

 

September 2023


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[2] ESHRE Endometriosis Guidelines 2022. 

[3] Endometriosis facts and figures, Endometriosis UK. Available from: https://www.endometriosis-uk.org/endometriosis-facts-and-figures.

[4] NICE 2017 Endometriosis Guidelines

[5] Endometriosis in the UK: Time for Change - APPG on Endometriosis Inquiry Report 2020

[6]Agarwal SK, Chapron C, Giudice LC, Laufer MR, Leyland N, Missmer SA, Singh SS, Taylor HS. 2019. ‘Clinical diagnosis of endometriosis: a call to action.’ Am J Obstet Gynecol;220(4):354.e1-354.

[7] Horne A W, Missmer S A. Pathophysiology, diagnosis, and management of endometriosis BMJ 2022; 379 :e070750 doi:10.1136/bmj-2022-070750

[8] Davenport S, Smith D, Green DJ. Barriers to a Timely Diagnosis of Endometriosis: A Qualitative Systematic Review. Obstet Gynecol. 2023 Jul 13.

[9] Márki G, Vásárhelyi D, Rigó A, Kaló Z, Ács N, Bokor A. Challenges of and possible solutions for living with endometriosis: a qualitative study. BMC Women’s Health. 2022 Jan 26;22(1):20.

[10] Rogers, R., D'hooghe, T. and Fazleabas, A., et al. 2009. 'Priorities for endometriosis research: recommendations from an international consensus workshop', Reprod Sci;16(4):335-46.

[11] Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres [published correction appears in Hum Reprod. 2014 Sep;29(9):2073]. Hum Reprod. 2012;27(5):1292-1299. doi:10.1093/humrep/des073

 

[12] Missmer SA, Tu F, Soliman AM, et al. Impact of endometriosis on women’s life decisions and goal attainment: a cross-sectional survey of members of an online patient community. BMJ Open 2022;12:e052765. doi:10.1136/ bmjopen-2021-052765

[13] NICE 2017 Endometriosis Guidelines.

[14] Davenport S, Smith D, Green DJ. Barriers to a Timely Diagnosis of Endometriosis: A Qualitative Systematic Review. Obstet Gynecol. 2023 Jul 13.

[15] APPG Endometriosis Report.

[16] ‘Left for too long’ report. Royal College of Obstetricians and Gynaecologists. More than half a million women face prolonged waits for gynaecology care | RCOG. https://www.rcog.org.uk/news/more-than-half-a-million-women-face-prolonged-waits-for-gynaecology-care/

[17] Meuleman C, Vandenabeele B, Fieuws S, Spiessens C, Timmerman D, D'Hooghe T. High prevalence of endometriosis in infertile women with normal ovulation and normospermic partners. Fertil Steril 2009;92(1):68-74.

[18] Horne A W, Missmer S A. Pathophysiology, diagnosis, and management of endometriosis BMJ 2022; 379 :e070750 doi:10.1136/bmj-2022-070750

 

[19] Revisiting the impact of race/ethnicity in endometriosis - PMC (nih.gov)

[20] Sivajohan B et al. Clinical use of artificial intelligence in endometriosis. Npj Digital Medicine (2022); 5; 109. https://www.nature.com/articles/s41746-022-00638-1