Tom Hayes (Tipperary South, Fine Gael)

I support the sentiments that have been expressed. I recently went to a briefing of the south Tipperary branch of the Cystic Fibrosis Association of Ireland. I looked for the briefing in order to inform myself better on something about which many people had come to me as a result of the radio programme where the issue was highlighted. I cannot remember the last time that I saw such anger, tears, disappointment and utter disillusionment with the work of the Government. These emotions were universal throughout the room. I met families who felt utterly isolated by the Government. They felt the Government had turned its back on their plight. We have lived through the most extraordinary growth this country has ever known, yet patients have seen no improvement and have only experienced further distress. Things have not improved this year for patients, in fact they have got worse.

I heard heart rending stories about people and their struggle with a life-altering illness requiring huge sacrifice from every family member. These are sacrifices in time, money, comfort, careers and other aspects. It is time consuming for all concerned. There are hours of physiotherapy every day, along with over 50 tablets daily, fitness tests, hospital visits, consultant visits, emergency room waits and so on. The HSE does not come out of this very well. We have heard enough negativity so I will not go on about it. We should do more from now on.

The essential requirement of bypassing the accident and emergency department and providing isolation units for cystic fibrosis patients is absolutely key to this. I believe some improvements will be planned in this area. Getting a medical card and a carer's allowance should not be means tested for those patients. The families affected should not struggle to finance constant medication, doctors' visits, standard physiotherapy appointments and varied sports activities so that children can get adequate exercise and diet. They should not struggle to finance high calorie diets with expensive diet products, transport to hospitals and overnight stays. The reality is that these people suffer a great amount and we should not allow that to continue.

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