Ms Vicky McGrath:

The 2014 to 2018 plan was assessed by the Department in 2019. Publication of the outcomes of the assessment would be helpful to understand where we are today and where the gaps lie in the existing plan. Realistically, if we are going to take the whole person we need to look at a major overhaul of the existing plan. We also need to do a major overhaul of the existing plan to account for the innovation that has happened in the intervening period.

From our perspective, a group of us met the Minister at the end of March and a commitment was given that somebody would be identified in the Department to take the lead on this. We still have not heard anything in this regard. It is a starting point. We need somebody who will take ownership and leadership of this. This is not going to happen outside of the Department or the health service. We need all players in the room, and to do this we need somebody to take the lead. To be blunt, at present Rare Diseases Ireland is just me part time. I do not have the resources to take the lead on this. I would love to say that patients will grab it and push it forward but we just do not have the resources. We need the resources brought to bear on this.

As I said in my opening statement, we have seen where leadership from the Department in other areas has led to change, improved outcomes and the provision of better services and we are looking for something similar. We need to take this on at political, leadership and policy level and drive the changes that are needed. It is only with this do we feel we will reach the goals of Rare 2030 and there is joined-up thinking across the board.