“Independent Review”July 2011 and “coalition of disease-specific support groups”

The Review Group in its report, Part 2, p14,  states that it  ” 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”.

The Dept. of Health website in  its  Part 1,vol 2 – Appendices to the Independent Review  lists the Review Team as having only  one meeting with parents/care givers meeting   at which  representatives of  3 organisations – Children in Hospital Ireland (Ms D. McMahon, Chairperson and Ms M. O’Connor CEO), together with Heart Children Ireland (Ms M. Rogers, CEO and  Ms S. Tracey, Chairperson) and the New Crumlin Hospital Group (Mr L. Roden, Chairman)were present.

NCHA knows of no coalition of  “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  of various patient support organisations.  The Jack and Jill Foundation and Down Syndrome Ireland, for example, are among signatories to a current major submission to An Bord Pleanála expressing grave reservations about the proposed Mater site .

We will continue to post comments on the “Independent” Review group’s report  while we await the FOI data, requested from the Department of Health, required to analyse the Report in depth.

Read the report here