Joe McHugh (Donegal North East, Fine Gael) | Oireachtas source

I am raising this issue on behalf of some parents who have boys with Duchenne muscular dystrophy, a rare disease that affects approximately 100 boys in Ireland. Before I discuss the specific circumstances of the parents on whose behalf I am speaking, I wish to put on record the good work and good service delivery at the Central Remedial Clinic, CRC, in respect of various sectors. Some parents send their boys with Duchenne muscular dystrophy to the clinic. It is important to record that I am not speaking on their behalf but on behalf of parents of boys who do not attend there. Approximately a dozen parents bring their boys to Newcastle, the reason being that bisphosphonates are available there on prescription. In conjunction with steroids, this treatment is producing very positive results for the boys. According to one of the parents, the survival rate is staggering. Another parent has said to me that all parents are trying to do is keep their children on their feet for as long as possible.

With Duchenne muscular dystrophy, best practice changes nearly every six months. It is a new area. There is a clinical trial site in Newcastle but none here. This presents a difficulty for the dozen or so families who are sending their boys to the United Kingdom.

There is a new administration temporarily in charge of the CRC. We are all aware that the board has stepped down and that the chairman is no longer in situ. There is a new administrator. All I am asking on behalf of the dozen or so affected parents is that the new administrator meet the parents and listen to them. They have experience of very good service delivery in Newcastle. They want to bring something to the table that might be of value and help in the delivery of services here. This is not about saying one service is better than the other; it is required of the Government to be big enough to say that if there are new ideas being applied in Newcastle, it is willing to learn from them. All I ask is that the dozen or so parents be listened to because they could bring value to the debate and be of benefit to the other parents in Ireland whose affected boys are just on steroids and who do not have the opportunity to take bisphosphonate.

For many years, I have been advocating the location of a clinical trial site in this country.

I am aware of the current economic constraints, but we should still focus on the possibility of developing a clinical trial site in this country.

See this speech in context