The Review Group in its report, Part 2, p14,\u00a0 states that it\u00a0 ” heard from a group of parents and care givers, representing a coalition of around 40 disease-specific support groups”. It reports the group as wanting to see early progression on the current selected site, and of suggesting “that there remained (sadly) an inappropriate weighting on an individual institution’s welfare rather than a genuine priority for the child and the future of child health”.<\/p>\n
The Dept. of Health website in\u00a0 its\u00a0 Part 1,vol 2 – Appendices to the Independent Review\u00a0 lists the Review Team as having only\u00a0 one meeting with parents\/care givers meeting\u00a0\u00a0 at which\u00a0 representatives of\u00a0 3 organisations – Children in Hospital Ireland (Ms D. McMahon, Chairperson and Ms M. O\u2019Connor CEO), together with Heart Children Ireland (Ms M. Rogers, CEO and\u00a0 Ms S. Tracey, Chairperson) and the New Crumlin Hospital Group (Mr L. Roden, Chairman)were present.<\/p>\n
NCHA knows of no coalition of\u00a0 “around 40 disease -specific support groups”. If there is such we would be most keen to meet with it to clarify its position as we fear there has been significant misrepresentation to the Review Group both of our organisation’s position and that\u00a0 of various patient support organisations.\u00a0 The Jack and Jill Foundation and Down Syndrome Ireland, for example, are among signatories to a current major submission to An Bord Plean\u00e1la expressing grave reservations about the proposed Mater site .<\/p>\n
We will continue to post comments on the “Independent” Review group’s report\u00a0 while we await the FOI data, requested from the Department of Health, required to analyse the Report in depth.<\/p>\n