Oireachtas Joint and Select Committees

Thursday, 26 February 2015

Joint Oireachtas Committee on Health and Children

Implementation of National Rare Disease Plan 2014-18: Discussion

9:30 am

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

On the same issue and the response to Senator Jillian van Turnhout that it was intended to incorporate such a facility within the new national paediatrics facility, presumably the St. James's Hospital site, that is the way it is to proceed, but it is not expected to come on stream until 2019 at the earliest. What is to happen in the interim? Can the delegates anticipate that we will at least see an interim facility up and running pending the commissioning of the new national paediatrics centre?

Dr. Devlin glossed over my point a little about oversight and an oversight committee. There were 48 recommendations made in the context of the national plan. Will there be an oversight committee? Will the steering committee carry out this function in the interim? How inclusive will the oversight committee be? I happen to believe it needs to be more representative of many of the groupings involved. There is a need for more direct involvement and the oversight requires to be very focused and an intimate relationship where the people most directly affected will have an opportunity to ensure what is proposed will actually be delivered at the earliest opportunity.

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