Endometriosis
Endometriosis is a long-term condition where tissue similar to the lining of the womb is found elsewhere in the body. The symptoms can be debilitating and impact on relationships, work, education and mental health.
We are committed to ensuring those living with endometriosis are able to access the best possible care and support. As well as benefit from healthcare services that are safe, effective and put people at the centre of their care.
We published the Women’s Health Plan in 2021. This addressed women’s health inequalities by:
- raising awareness around women’s health
- improving access to healthcare for women
- reducing inequalities in health outcomes for girls and women to improve access to health care for women across their life course and to reduce inequalities in health outcomes for girls and women
The plan is to improve access to appropriate support, diagnosis and the best treatment for endometriosis.
Actions
Funding
- we invested £25,000 in 2020 to 2021 to commission Endometriosis UK to investigate why the NICE guideline on Endometriosis is not being consistently followed in Scotland and produce a report which detailed the findings. This report has been used to inform actions to support improvements in care and support for those with endometriosis.
- we awarded £15,000 to Endometriosis UK in 2022 to develop a survey to better understand the needs of those who are newly diagnosed and those awaiting diagnosis and to conduct two webinars for those newly diagnosed in Scotland
- we funded a £25,000 campaign with Young Scot to increase young people’s awareness of endometriosis. The campaign primarily targets those aged 11 to 25 in Scotland and provides information and education resources on how to support a young person who is in the process of diagnosis or who may have already been diagnosed with endometriosis.
Raising awareness
- we updated the NHS Inform pages on endometriosis to ensure that people across Scotland are able to find accurate and accessible information on Endometriosis and the support available.
- in 2022 we updated the Relationships, Sexual Health and Parenthood (RSHP) curriculum resource for senior year pupils with the endometriosis animation created by Endo Warriors West Lothian, and the EXPPECT centre in Edinburgh.
- we are raising awareness of the Modernising Patient Pathways Programme (MPPP) Integrated Endometriosis Referral Care Pathway for NHS Scotland adapted from NICE guidelines. The pathway provides a streamlined integrated primary, secondary and tertiary care pathway that aims to provide a holistic approach and timely care for those with endometriosis and endometriosis-like symptoms
- we have worked with Parent Club to create a menstrual health web page. This helps to raise awareness of endometriosis and provide signposting to support pages for those with the condition and their families
Research
Investing in research into endometriosis is vital to help us achieve better care for those with endometriosis.
In collaboration with the charity Wellbeing of Women we awarded University of Edinburgh research team £250,000 in 2023 to trial a potential new treatment for endometriosis pain management.
In January 2023 we announced £299,000 funding for the ENDOCAN project, led by researchers at University of Edinburgh. This will investigate whether a large scale, UK-wide trial to determine whether a cannabinoid can reduce endometriosis-associated pain.
Groups
In 2021 we formed an endometriosis lived experience forum. The forum will support the sharing of knowledge and expertise as well as the current processes and pressures in the support, diagnosis and treatment of endometriosis. Lived experience is essential to ensure policy decisions reflect the priorities of women living with this chronic condition.
We established an endometriosis advisory group in 2022 of endometriosis specialists, secondary care health professionals and service managers to increase collaborative working, inform policy actions and drive improvement.
More information
Further information on endometriosis and the support available can be found on the NHS Inform website.