Eamon Scanlon (Sligo-Leitrim, Fianna Fail) | Oireachtas source

I wish to raise an issue I have raised with the Minister on a number of occasions previously. In fairness, I am aware that the Minister of State is doing his best to resolve the matter. It relates to a facility built in Sligo to cater for adults and young people and provide respite care for parents and families. The facility was built at a cost of €1.2 million six years ago. There were 28 service users, although unfortunately many families tell me they are having great difficulty getting any respite night. The Health Information and Quality Authority, HIQA, is part of the problem. The staff numbers have been allowed to drop and, as a result, HIQA has said the staff numbers are not sufficient to cater for the people concerned. Nobody can begin to understand the difference this type of service makes for families with family members who have disabilities. There is no question that they need respite care and they must know their family members are in a place where they are safe and well looked after. Unfortunately, that is not the case at present. I am aware that the Minister has made funds available but I am told that it will take another two to four months for this issue to be resolved. That is unacceptable. We must support the parents and the people concerned.

With regard to Orkambi, we were given a presentation today by two parents, the sister of a girl from County Sligo who died at the age of 21 years, the mother of a child aged 12 years, the mother of a child who has passed away and the chief executive officer, CEO, of Cystic Fibrosis Ireland. They told us about the difference the drug can make. Jillian McNulty, who has been using the drug, gave a presentation also. Her quality of life has changed completely. The CEO told us that 56,000 bed nights were used in hospitals last year by cystic fibrosis, CF, patients who were obliged to go to hospital. I believe massive savings could be made. Unquestionably, there will be a requirement for bed nights in hospitals, but savings could be made if Orkambi could be made available. We should not be putting a price on a life.

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