Ms Ilanna Darcy:

There have been some positive steps already. Endometriosis and menopause are both covered under the women's health action plan and the development of a national endometriosis framework will definitely be a move in the right direction. There is one issue that we still have concerns about. What we would like to do as a charity, with potentially more support or funding, is to use the information that can be obtained from people living with the condition and feed it back so that it is incorporated into the health strategies. This will ensure that the strategies are effective in treating the condition. What is happening at the moment is that we are assuming it is one in ten women. Under the endometriosis framework that was published, there has to be an assumption around the number of complex cases and this has driven the narrative around the number of expert centres that are required. Our concern is that without proper data, we do not know if that infrastructure is sufficient. We hope that as a charity we will be able to grow and expand our reach within the endometriosis community to collect some data. Obviously, we would need some support to be able to do that. The data could then be fed back into health strategies to make sure the provision is adequate. At the moment, there are not enough data.