Endometriosis: lived experience insight report 2023

Progress So Far

The Scottish Government is committed to improving endometriosis care and has been working to deliver on the actions in the Women's Health Plan.

Awareness

We recognise that the public needed to understand the condition better and be able to recognise the symptoms of this common condition.

To support this we have:

• launched an updated and informative endometriosis page on NHS Inform.
• worked with Parent Club, the ALLIANCE and Young Scot to share information on a wider scale and start discussions.
• worked with Relationships, Sexual Health and Parenthood to provide further ways for teachers to speak with their pupils about the condition.

Research

It is known that women's health research is underfunded and it is important to develop research into women's health conditions to ensure the most effective treatment options and support are being provided.

To support this we have:

• jointly funded a £250,000 endometriosis research project with charity Wellbeing of Women which aims to find a non-hormonal treatment option for endometriosis-associated pain.
• funded the ENDOCAN project, which aims to investigate whether a cannabinoid will reduce endometriosis-associated pain.

Pathways and Building Relationships

We know that to support improvements for endometriosis care it is important that there are clear treatment pathways to follow and we are continuously hearing from those with lived experience and clinicians.

To support this we have:

• supported the Modernising Patient Pathways Programme to raise awareness of the Endometriosis Referral Care Pathway for NHS Scotland.
• continued to work with our Endometriosis Lived Experience Forum to understand where there are things going well and where things could be improved.
• developed an Endometriosis Advisory Group made up of clinicians and service managers to understand barriers to service delivery, share best practice and advice on policy development.