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

It will change the way services are delivered in Europe. The parents of the children to whom I refer will continue to travel to Newcastle, regardless of when the directive is transposed. They were a little sore when the E112 forms were withdrawn, but I hope changes will happen early next year in that regard. Sometimes policy makers and politicians sit around the table and make decisions in the absence of the most important people - service users. The parents to whom I referred who travelled to Newcastle had an overwhelmingly positive experience, although that is not to say some of the parents of the children attending the CRC have not had a positive experience, too. The service in Newcastle has given these parents hope.

I do not want to put a figure on life expectancy for those suffering from this debilitating disease because parents have been given hope their children can live longer than expected. The children will be able to stand for longer and will not have to use wheelchairs when they are eight or nine years old. They are living longer and able to play with their peers in the school yard. Their parents want the best for them and we can learn so much from both the parents and children. They have had a great experience and have been given hope. Sometimes we ignore the important things in life like listening to people. The parents of these children have something important to bring to the table. We must sit down and listen to them because we will learn more from them than from the experts with PhDs and other letters after their names.

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