Mr. Kilian McGrane:

A question was asked earlier about whether or not there were effective pathways for those who are affected by this. During the course of the discussion today members have heard about the complexities involved in confirming a diagnosis and in the range of different service needs sufferers may have, from neural developmental to physical. This poses some of the challenges. Ms O'Donnell said that the FACS forum met the Minister and he had written to the HSE and has asked about the various clinical leads in the different areas - we can see the multiplicity of disciplines involved in providing care in this regard - and that we would meet with the FACS forum and start the process of identifying the needs and in looking at care pathways. The witnesses are correct when they say we must establish what the population we are dealing with is. We are hoping that it is a static population as the procedures outlined today are minimising the risk of future occurrence. However, we have people whose lives clearly have been massively impacted to date and we need a process for managing them. To do this, as has been said, we need some form of register. Dr. Murphy spoke of the value of a register and that it runs into the future and is not a static snapshot in time. It is about creating and understanding, so we can deal with all the factors. The process has started. I cannot give the Deputy a definitive answer because some of the questions are about the confirmation of diagnoses and we do not have the answer to this yet. Once this information is established the issue of the register becomes easier to manage, in the current phase and into the future. The development of the pathway will start as soon as we have the engagement with the right clinical specialists and with the FACS forum around the needs that have been identified to date. The FACS forum is very articulate in putting forward its views, and from this I presume that affected children are being disseminated into the wider system. There is no care worker, for example, dealing with specific needs and the families have to find the services where they are, which in many cases means there would be deficits in the services.