APPG on Endometriosis Inquiry Report 2020. Endometriosis in the UK: time for change (October 2020)

Summary

An Inquiry by the All Party Parliamentary Group (APPG) on Endometriosis has highlighted the devastating impact endometriosis can have on all aspects of a person’s life, and urges Ministers to take bold action to ensure those with endometriosis have access to the right care at the right time.

The inquiry surveyed over 10,000 people with endometriosis, interviewed healthcare practitioners and those with the condition about their experiences.

Content

Key findings

- Average diagnosis times for endometriosis have not improved in over a decade – it still takes 8 years on average to get a diagnosis;

- Prior to getting a diagnosis and with symptoms:

• 58% visited their GP more than 10 times
• 43% visited doctors in hospital over 5 times
• 53% visited A&E;

- Once diagnosed, only 19% know if they are seen in an endometriosis specialist centre;

- 90% would have liked access to psychological support, but were not offered this.

Recommendations

In order to support those with endometriosis, the APPG has called on all Governments in the UK to commit to a series of support measures for those with endometriosis including:

• Commitment to reduce average diagnosis times with a target of 4 years of less by 2025, and a year or less by 2030.
• To ensure a baseline for endometriosis diagnosis, treatment and management by implementing the NICE Guideline on Endometriosis Treatment and Management (2017), adopted across the UK, but not implemented.
• Up to 10% of those with endometriosis will have the disease outside the pelvic cavity, yet the NICE Guideline only provides a care pathway only for endometriosis within the pelvic cavity. The APPG is calling for NICE to ensure that care pathways for all locations of endometriosis are developed and implemented, starting with thoracic endometriosis.
• Investigation into the barriers faced in accessing care for those from black, Asian and minority ethnic backgrounds and end the ethnicity and gender gaps in medical research.
• Invest in research to find the cause of endometriosis, better treatment, management and diagnosis options, and one day a cure.
• A commitment from all 4 nations to include compulsory menstrual wellbeing in the school curriculum so that young people recognise the warning signs of menstrual health conditions and know when to seek help. This is compulsory in schools in England from 2020, but is not UK wide.