Sandra McLellan (Cork East, Sinn Fein) | Oireachtas source

I welcome the representatives and commend them on the work they are doing. The presentations were at times very emotional and excellent and among some of the most compelling made to this committee.

I have made a lot of notes because the presentations were so good, but I want to pick up on some points made. On the lack of awareness of general practitioners of the rare diseases, the representatives said that parents often become the experts, which is correct, but I find at times the GPs are sending the parents to constituency offices to try to access services and get proper assessments on diagnosis. That comes back to the question, namely, why we are still awaiting a properly resourced national office? That is a no-brainer.

I refer to the point on the transition from child to adult. I may have picked it up a different way but with regard to children under 16 and the domiciliary care allowance and the carer's allowance, when some children turn 16 they get a letter to the effect that the carer's allowance or the domiciliary allowance is being stopped. There is sometimes a lack of understanding of the rare diseases. Parents then raise the issue with us but it might take them another two years to get those allowances in train. We see that happen frequently, and I am sure the representatives come across it frequently as well.

The presentation from the Special Needs Parents Association was very good. The fact is it is a voluntary organisation and its members have to refer parents to the Genetic and Rare Disorders Organisation, GRDO. It appears from the presentations that there is just one employee who works 15 hours a week.