Maria Byrne (Fine Gael) | Oireachtas source

I thank the Minister of State. I am disappointed, not with the Minister but with the response. First, there is a two and a half year long waiting list for these children and the adults involved. This is not addressed in the response from the HSE. Second, they need an upright MRI scan to be recognised. As I said, it is reckoned there are approximately 500 people in Ireland, between adults and children, with different levels of severity of the condition. As stated in the response, these people are treated collectively by different consultants but there is no one who deals specifically with Ehlers-Danlos syndrome. As a result, there is no one qualified to sign off on permission for people to be covered under the cross-border directive. These people must go abroad for the operation because there is no one in Ireland qualified to perform it. This is not covered in the response either. These are two crucial issues. What happens a lot of the time is that when the children go into hospital, and many of them have gone into the local hospitals, the neurologist or whoever else is not trained to deal with the severity of the pain of these children. The pain they go through is sometimes quite excruciating.

We need someone who knows something about this. I know it is a rare disease but we must deal with it because the numbers with the disease are growing. Perhaps a neurologist who is sent on a course could deal with it specifically and with the people affected. It is terrible to think that people have to go abroad for their treatment and that there is no one here to sign off on this treatment.