Oireachtas Joint and Select Committees

Thursday, 6 December 2012

Joint Oireachtas Committee on Health and Children

Discussion with Fibromyalgia Sufferers of Ireland and Spina Bifida Hydrocephalus Ireland

9:55 am

Mr. George Kennedy:

Told by the HSE. We worked with the HSE on this particular aspect. This phenomenon is happening, with one in 80 children being born with these conditions. Our organisation is working flat out trying to service our members. At our Ballinasloe conference in May 2009 one of the HSE representatives addressed 200 of our members who have issues with this problem. The HSE representative promised that this urologist would be in place in the immediate future. This time last year, we wrote to the HSE's representatives. We met them on 29 February this year and were guaranteed that the finance had been laid aside. To date, nothing has happened. It has caused huge issues for our organisation and its members. I ask the committee to help us in this area. We are a proactive organisation. There are 18 of us but we have some of the finest volunteers throughout the country. We are working as diligently and hard as we possibly can, but we need the committee's help now.

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