Annie Hoey (Labour) | Oireachtas source

I thank Dr. Lynch for addressing the issue a second time. My apologies for bringing it up again. I always throw the net out when there is a topic coming up for discussion at the committee. I spoke to a couple of people who have rare diseases. I spoke to a person who has myalgic encephalomyelitis, ME, and explained the situation. Approximately 14,000 people in Ireland have this neurological disease but it is not recognised here. The person to whom I spoke told me about the lack of support from his or her GP, who said the condition does not exist and was not supportive and so on. Would it be fair to say that is not a stand-alone situation in terms of people with rare diseases struggling in the context of not being able access disability benefit because of the approach taken by their GPs? My impression from what the witnesses have said is that it is not a stand-alone circumstance, given the complexities around rare diseases, even though such a high number of people suffer from a rare disease, with 6% of the population affected, as was stated. It is about these smaller things. What does the committee need to do or what otherwise needs to be done to get buy-in - that is probably the wrong word - from GPs or a recognition by them of some of these rare diseases such that people do not have to rely on Chinese whispers that they will be believed by a particular GP or that another GP recognises this disease?

How can we move on from this kind of Chinese whispers process regarding who to see and arrive at a more comprehensive and generalised recognition by GPs of some of these rare diseases?