Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

Starting, if I may, with the patient liaison, the Deputy and I had a really positive and useful meeting with patients and families who are dealing with rare diseases. The point they were making was that there is all manner of frustrations, blockages and complications in the system and they would really benefit from having someone within the HSE who engages with them and can take on board what may be fairly minor improvements that would make a big difference to the children, adults and families involved. In the first instance, I want to continue that conversation as part of putting this new plan together. I am certainly very open as per the Deputy's question to having a specific point person. Because these are rare diseases and the numbers of people involved are so low, the patients and families do not have the same share of voice and representation, let us say, as oncology patients or others. That is something I am very open to. I will answer the Deputy's second question when I come back.

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