Maureen O'Sullivan (Dublin Central, Independent)

I thank Deputy Finian McGrath for sharing time. I have no wish to repeat the obvious, which is the need for adequate and proper care for cystic fibrosis patients. Such care is long overdue and its lack has caused immense suffering to patients and their loved ones. The campaign in 2008-09 of the Cystic Fibrosis Association of Ireland, CFAI, was to ensure that the HSE lived up to its commitment to build the long-promised facility at St. Vincent's Hospital. This facility cannot be delayed any further. How can funding for life-saving services be delayed, withheld or allowed to become swamped in a dispute such as the recent one concerning a car park facility? In addition, life-saving devices and services should not be dependent on fundraising activities such as table quizzes or the CFAI's Buy a Brick fundraising venture.

There are more than 1,000 cystic fibrosis patients in Ireland. Ireland has the highest prevalence of cystic fibrosis in the world. Moreover, we have the most severe types and the largest proportion of families with more than one member with cystic fibrosis but yet, Ireland has the poorest resources for patients. I have read the graphic account of living with this illness as written, for example, by Orla Tinsley in recent years. I do not know how anyone, particularly those who work in the area or those in the HSE, can read these articles and not immediately take on board the issues and needs and then find the requisite resources. Ms Tinsley stated that people in Ireland die younger than in other countries because of the lack of proper standards of care by the HSE. Although she has won a number of awards for her campaigning, the best and most appropriate award would be to follow through on what is needed.

Members should imagine being afraid to go into hospital. Although successive reports have indicated the urgent need to provide simple single rooms with bathrooms en suite in a dedicated unit, cystic fibrosis patients still do not have this facility. Consequently, they are in a catch-22 situation wherein they need hospital care but such care is dangerous and even life-threatening because of the lack of proper facilities. I agree with Deputy Finian McGrath's assertion that this is a national issue and not simply one for Dublin. In March 2010, Temple Street Children's University Hospital officially opened a brand-new cystic fibrosis and respiratory outpatient unit at the hospital. The total cost was €3.2 million, €2.5 million of which was raised by donor support, corporate partnerships and intense fundraising. People with cystic fibrosis and their loved ones have enough of a battle on their hands in dealing with the illness without having to take on fundraising and media campaigns to highlight the lack of a need for proper care facilities.

I believe the Minister when she said she consistently emphasised the need to improve facilities and services to persons with cystic fibrosis. I call on the HSE to stop posturing and playing games and to do what is right and morally just and put the money where it is needed.

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