Endometriosis and people with learning disabilities

Evidence suggests that people with learning disabilities face additional obstacles to getting diagnoses and appropriate care, including when it comes to endometriosis, such as: 

• Staff having little understanding about learning disability 
• Failure to recognise that a person with a learning disability is unwell 
• Failure to make a correct diagnosis 
• Anxiety or a lack of confidence for people with a learning disability 
• Lack of joint working from different care providers 
• Not enough involvement allowed from carers 
• Inadequate aftercare or follow-up care.

The UK All-Party Parliamentary Group (APPG) on Endometriosis recommends that people with additional needs, such as learning disabilities, should have access to appropriate patient information and resources. 

Endometriosis.cymru has created ‘easy read’ versions of the most important and relevant information on the website. 

The APPG Report on Endometriosis also recommends that further research be carried out to gather more information about the needs of people with learning disabilities, so that improvements can be made to the healthcare and support offered. 

Providing accessible information is just one way to address some of the barriers to healthcare services that have been identified during the website’s development. There are many other voices and communities who need to be heard if healthcare is to work as well as it can, for everybody. We aim to continue research to provide new content for these communities in due course. 

More information on the APPG on endometriosis, including contact details, can be found here.