Ms Joan O?Donnell:

I will respond to some of the figures very briefly and then Mr. Peter Murphy will come in also. The 29 cases referred to in the report were just the number that the study looked at. Our figures, from Professor Andrew Green chief geneticist in Our Lady's Hospital for Sick Children, Crumlin, tell us that 43 cases have been diagnosed that have come through the genetics department at Crumlin hospital. Professor Green also tells us that this figure does not include anybody who was not diagnosed via that and who may have had spina bifida, for example. The estimation of 400 children affected is one we ran by Professor Green. We extrapolated from the UK figures, where an estimated 20,000 children have been affected. We looked at the figures over the course of the years since Epilim was introduced in Ireland and we also made allowances for the declining prescription figures currently. We are happy to share this figure for estimation, which is the most robust estimate we can make at the moment. We have had some medical opinion on it and they seem to concur that the figure of 400 looked about right.

I will now turn to the issue of diagnosis. The HSE's perspective in this regard is from a clinical point of view. I totally understand that the HSE representatives here today are looking at the complexity of the issues and grappling with how difficult it can be to diagnose, but I also want to put a parent's perspective on it. Parents know their children best. They very often report to us that their concerns about their children are dismissed, that their expertise in regard to their own children is ignored and that they are batted back out of the system. We also hear that parents are going to France, Northern Ireland and other jurisdictions, including the UK, because there is a two year waiting list here. We are concerned that perhaps there may be a reluctance to diagnose because of the complexity of the issues. These are all aspects that we need to get over. We need to create a comprehensive system of supports and a clinical pathway for children who are affected.