Ms Anne Lawlor:

I am so grateful to have had the opportunity to listen to the debate. However, I cannot be all things to all men and my position with GRDO has only existed since December. I work full time on a voluntary basis and my other hat is that of chairperson of the 22Q1 Ireland Support Group. Individually these conditions are rare but collectively they are common, there is a huge overlap with disability and the issues are the same such as medical, educational, social, psychological and psychiatric.

Someone asked a question about the psychiatric angle so I shall tie it to the question about the ability to carry out research. The 22Q1 Ireland group is totally voluntary and has embarked on its seventh research project in this country. The latest project is with the genetics centre in Trinity and concerns the link between schizophrenia and 22Q. We undertook the project because one in four children born with 22Q will develop schizophrenia and will also have a range of mental health problems. Research is doable because an international 22Q brain consortium exists and I know all of its researchers. Even though all of this work is done on a voluntary basis one should never underestimate the power of patient groups and what drives them. We love our children. As we heard from Mr. Declan McPhillips, we will do anything to help them and the issues are the same.

Most of the points have been covered but I wish to say one thing about GPs. The problem often lies with the fact that no-one connects the disparate symptoms so awareness among GPs must be raised. When one goes to a GP with disparate symptoms there may be an underlying cause. My daughter had dozens of disparate symptoms but she was not diagnosed until she was 15 years old. Accurate information is not available and that is why I helped set up the group. I hope that I have covered all of the points.