Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

When will the Minister meet the representatives, that is, the parents of the children affected? I understand that 54 affected persons are represented by SOUND. It is important that the Minister would meet the representatives as soon as possible. When will the Minister deliver the promised supports for these children? It must be borne in mind that what they are asking for is very reasonable indeed. They want an awareness campaign for medical professionals and the public, which would be very sensible. They also want access to rapid diagnosis, a special services medical card, continuing educational supports, access to new drugs and treatments and compensation. This is a matter that deserves cross-departmental address but the Department of Health has to be the lead Department. Finally, the advocacy group is also calling for the official recognition of narcolepsy as a disability. That is very important because these children will grow up into young adults and future adult life and their condition may very well affect their employment prospects. Only by designating narcolepsy as a disability will they be able to access disability allowance if their work life is interrupted in any way.

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