Endometriosis: lived experience insight report 2023

Overview

Women's Health Plan actions

The Women's Health Plan identifies that there are aims and actions which sit under the endometriosis priority outcome.

Priority

Improve access for women to appropriate support, speedy diagnosis and best treatment for endometriosis.

Aims

1. Average diagnosis time for endometriosis will be reduced.

2. All women will be able to access the right support and effective treatment for endometriosis.

3. When required, all women will have access to a specialist endometriosis centre.

Actions

• Implement and raise awareness of current national guidelines on endometriosis and develop and implement further pathways for care where these don't currently exist—for example, endometriosis outside the pelvis.
• Commission endometriosis research to find the cause of the condition, leading to the development of better treatment and management options, and a cure.
• Strengthen collaborative working between regional specialist endometriosis centres, territorial and special NHS boards, and primary care providers, to drive improvement in patient pathways and achieve equitable access to care and treatment.

Overview

Sample and methodology

Twenty interviews were conducted in January 2023 with people with lived and living experience of endometriosis. We worked with endometriosis support group networks across Scotland to gain a geographical spread of the type of care being provided for endometriosis. The interviews were hosted on Microsoft Teams and we had both phone calls and video calls.

For the process of considering participants we identified that we should not discriminate between those who had surgical diagnosis and those with a working diagnosis (a diagnosis without surgery) as an important part of the diagnosis journey is in primary care level.

Out of the twenty interviews, one participant was being treated under a working diagnosis.

We also created a lived experience survey which we circulated to Scottish Government staff to build upon the sample size. We received three further accounts of having endometriosis through this, including two further participants being treated under a working diagnosis.

The interviews and survey provided qualitative insight into people's experiences of endometriosis – their treatment, care and support.

Throughout this we worked with a Quality Improvement Advisor within the Scottish Government who interviewed the participants. We worked with our Improvement Advisor to design a set of key themes and questions which we planned to cover throughout the conversations.

We recognise that there are limitations within the study. The study predominantly focussed on those who were members of a lived experience group, which may have limited the types of experiences. In particular, hearing from those experiences where there hasn't been support from a support group.

Whilst there were a wide range of geographies represented by participants, we acknowledge there was a more limited range of socioeconomic groups and minority ethnic group participants. As we did not recruit to a sample frame or quota, but instead included all people who self-selected to participate, we were not able to specify socioeconomic group or ethnicity. For future we will explore other routes to recruiting from these groups to increase diversity of participants.

Overview

What did we want to find out?

Endometriosis pathways and service delivery

It was important for us to understand how people with endometriosis were accessing services and what those services and treatments were. We wanted to develop a picture of the services currently being offered and how this compares to current NICE Guidelines and the new Endometriosis Referral Care Pathway for NHS Scotland. We also wanted to identify any key barriers to treatment or support which those with the condition felt they required.

Living with endometriosis

We wanted to better understand the experiences of people living with or expected to have endometriosis; in particular, how the condition affected a person's quality of life and wellbeing.

A key aspect of this was to understand what kind of support resources people found helpful to manage their condition and to identify if people were using any self-management tools or techniques that had benefitted them.

Listening to ideas

Listening, learning and understanding from those with endometriosis is vital to inform policy change. Through the conversations we felt it would be crucial to understand what people with lived experience felt would make a positive change in the diagnosis and management process. It was also important for us to get a sense of what their priorities were when speaking about support and treatment.

Overview

Insights summary

Throughout the interviews clear themes emerged from the conversations. In particular, the feeling of being dismissed, unheard and not believed when speaking to healthcare professionals throughout primary care, secondary and in A&E.

"I never got anyone to take me seriously. Doctors told me painful periods were normal."

When people expressed positive communications with healthcare professionals this made a significant impact on mental health and wellbeing. It also helped rebuild trust with healthcare staff and develop more confidence in the advice being provided.

"First time in years somebody actually listened to me."

During the interviews, participants expressed the importance of peer support through endometriosis support groups across Scotland. These groups aim to improve the lives of people affected by endometriosis in Scotland. They do this by offering advice, comfort and relevant resources, research and events for those with the condition or seeking more information about symptoms.

"The endometriosis support group page got me through this; I don't think I could've done it without them."