Dr. John Murphy:

The pathway is not firmly established for them. The children will come from a number of primary specialists who deal with the immediate problem the child has, be it a physical disability, psychological issue or learning issue. They will come from a number of different sources. There needs to be somebody in a position with sufficient information and knowledge to be able to finally and definitively say: "This is a case of this disorder." It then kicks on from there. Diagnosis makes a big difference to a child and a family. Once they have a clear diagnosis, they can move forward as they are not looking for the diagnosis anymore. It has been established and they can move on into the therapies and supports they need. That is a key point. It unlocks the door for these families. This is where it is currently in the State. This is why there are discrepancies in the numbers. One would like to think that with bit more effort and work we could come back here with the totals for the number of children who have been affected in the past, there is a register in place and any future children born to mums who have Epilim during pregnancy will be monitored very carefully.