Michael Lowry (Tipperary North, Independent)

Last Sunday night I met with the Tipperary cystic fibrosis organisation and heard heart-breaking stories of neglect and the failure of our health system to respond to genuine needs, problems with accommodation and facilities and problems with staffing levels. In the mid-west region the following concerns need to be addressed in the short term. The first is the provision of necessary, fully equipped ensuite bedrooms for cystic fibrosis sufferers in key adult and paediatric units in Limerick, Waterford, Cork and in the central unit in St. Vincent's Hospital, Dublin. This would prevent the risk of cross-infection that is of such danger and critically affects the survival rate of people with cystic fibrosis. Extra specialised training staff in cystic fibrosis care are badly needed, including an urgent need for the posting of a second cystic fibrosis nurse in Waterford Regional Hospital. In the home domiciliary care area we need a dedicated cystic fibrosis home nurse and a dedicated cystic fibrosis physiotherapist to cater for the mid-west area.

Cystic fibrosis patients should be automatically entitled to a medical card and their families should be entitled to a carer's allowance that is non-means tested. It is a disgrace in 2008, having all the information we have on the condition, that this policy has still not been initiated. Cystic fibrosis sufferers should not have to report to accident and emergency departments on the occasions when they need hospital care as they should not be subjected and exposed to the infections and viruses in those departments.

A national screening programme at neo-natal level should be initiated for the detection of cystic fibrosis. An early diagnosis and the correct treatment from birth would mean much better living prospects for cystic fibrosis patients.

I call on the Minister to initiate a national debate on the issue of presumed organ donation along the lines of the proposed UK model as outlined by Gordon Brown and the highly successful Spanish model that is currently in practice. While I acknowledge that many issues in this area need to be teased out and that the subject should be handled with extreme sensitivity, all parties can see the benefit of such a move to sufferers of many diseases.

In general terms the health service has been burdened and stymied by vested interests within the system. The time is long overdue for a Minister for Health and Children to establish as a first principle that patient need is paramount and that the welfare of patients is a first priority. I believe the Minister, Deputy Harney, has the courage, conviction and determination to tackle the vested interests within the health service and I will support her in her efforts to force and implement change.

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