Ms Ilanna Darcy:

I understand that they do. However, given the lack of proper data, it is hard to say. These are the types of things we need to understand better. We need to get information on how many people are suffering with this condition. We need to look at how many of those cases have a genetic link and how many do not. We need to establish how many people require surgery and where do they go to access it. This is the sort of valuable information we need to plug into the framework that is being developed.

We spoke about the framework in terms of what we were looking for in education, diagnosis, treatment and research. The Deputy' reference to pain management makes me think we have not covered in sufficient detail. The way endometriosis has traditionally been treated is not effective. However, we do no want people to stay on over-the-counter pain medication. That is really not the solution. We need to look at feeding this insight into the framework because it is a really important piece of it. Some people will have had the surgery, and may still need the pain management on a daily basis. This brings me back to Ms Aimee Brown and what she has had to do by herself to advocate for change to get what she needs. It is important that we encompass everything when we consider the framework.