Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)

Go raibh maith agat. Ar dtús, ba mhaith liom mo bhuíochas a ghabháil le Páirtí an Lucht Oibre as am cainte a thabhairt dom. I thank the Labour Party for the opportunity to participate in this debate.

What happened in the Dáil this week raises a fundamental question about ministerial responsibility, health policy and the strategic management of our health service. Within the space of one week we have had an announcement that funding for the Health Service Executive in regard to the development of the promised cystic fibrosis unit at St. Vincent's Hospital in Dublin would not be forthcoming and that the unit would not be up and running, as promised, in 2010. This was followed by a further announcement by the Minister for Health and Children that the development would now go ahead and be operational as early as possible in 2011, the unfolding of which raises serious questions. The Minister's announcement came after the nation had heard the anguish of cystic fibrosis suffers and their families.

In January 2008, following a hard fought campaign by cystic fibrosis sufferers, the Minister made her original commitment. This was broken last week only to be reinstated, apparently - I add the word "apparently" because I am not yet absolutely certain this unit will be delivered - by the Minister. The question arises: what kind of exercise in ministerial responsibility is this? What does this tell us about the management and delivery of key and critical health services? Decisions that clearly have huge implications for patients are being made based on the political heat being felt by the Minister and her colleagues at any given moment rather than on the identified needs of patients in what should be a properly planned, well-managed and equitably delivered public health service. That question must be posed. There is within that question serious matters that need to be addressed.

We can only imagine the emotional turmoil all of this has caused to cystic fibrosis patients, their families and many young friends in their respective communities. These people of whom we speak are young people. One of those patients, Ms Orla Tinsley, whom many of us had the opportunity to meet and greet outside the gates of this House only last week, has, it could be said, single-handedly done more than anyone to bring the reality of cystic fibrosis to the attention of the country. She has done so and deserves tremendous credit for her courage and articulation of the needs of young people like her. It would be unfair not to give deserved credit to many campaigning individuals, families and organisations. The Cystic Fibrosis Association of Ireland has championed this cause over many years.

In response to the latest development, Ms Orla Tinsley said she feels "mixed emotions of relief and uncertainty". We have to understand all of that. She also said she hopes the Minister's announcement will give "fresh hope to all people with CF around the country who are patiently waiting for dedicated CF facilities in their region". It is appropriate to cite some of what she said. She pointed out that "by pressing on with the facilities in St Vincent's it is acknowledging the serious lack of facilities for CF patients in our hospitals that the Department of Health and the HSE I hope will be addressing alongside the work at St Vincent's". Her reference to "our hospitals" is clearly a recognition of the need for facilities to be provided in all parts of the country. Such developments are absolutely essential.

In the concluding part of her statement, Ms Tinsley referred to two other critical matters. First, she highlighted the need for six additional "interim beds that were promised to be delivered by the end of 2008 at a site already located at St. Vincent's". Second, she pointed out that "the Irish transplant list" has performed just "one transplant of a Cystic Fibrosis patient in three years" and, sadly, "there are still people waiting and dying on that list".

The Cystic Fibrosis Association of Ireland has cautiously welcomed the Minister's statement to the effect that, "the 120 bed unit at St Vincent's Hospital, which includes the lifesaving CF Day Care Centre and 34 CF in-patient bed facility will proceed and be operational in 2011". We all hope that will be the case. I do not doubt that the Minister and her officials have noted the next part of the association's statement, which cannot be repeated often enough. It states:

As everyone is aware promises have been made and broken before and our young people with CF are living in fear of getting their hopes dashed once more. We want our young people living with CF not to fear going into hospital which this unit will achieve for the 300 patients attending St Vincent's, but we would ask that the Minister looks to speeding up the work, not delaying it, as the sooner we have the facilities the more young people's lives will be saved.

The association has made it clear that 25 young people - I am emphasise that we are mainly talking about young people - with cystic fibrosis died in 2008 alone. The bottom line is that lives can be saved if the facilities and resources that have been mentioned are provided. That is what this is about. Time after time, we have witnessed the cancellation, deferment or removal of health care service provision. Such actions have been taken in my constituency by the Department of Health and Children and the HSE, which claim to be interested in patient safety. We know that their real agenda in all of this is very different. They are interested in balancing the books and pursuing certain policies, such as centralisation, over-regionalisation and, of course, privatisation. None of those issues is relevant in this instance - we need to be solely concerned with providing facilities to save the lives of people with cystic fibrosis.

There can be no turning back from the most recent commitment of the Minister, Deputy Mary Harney, to complete this development by 2011. All of the elements of the project that have been mentioned by me and other speakers must be provided. It has been repeatedly pointed out that this country has the highest prevalence of cystic fibrosis in the world. In addition, Irish people tend to have the most severe types of cystic fibrosis. To our collective shame, this State has the poorest resources for cystic fibrosis patients in Europe. The truth is that successive Governments have failed cystic fibrosis patients and their families. They must not let us down again.

All Members of this House will participate in canvassing operations in the weeks leading to the European Parliament and local authority elections on 5 June next. As I recall it, from my previous canvassing experiences, the most heart-breaking experience a public representative can have is to meet the families of those with cystic fibrosis. It does not matter whether one is cold-calling or canvassing a household in the knowledge that there is a cystic fibrosis sufferer in it. When one has heard the mother's pleadings and met the beautiful young person who is coping with cystic fibrosis, despite having such limited prospects in terms of life itself, one comes away from the door of the household with a sense of helplessness because one cannot deliver what is needed to meet their needs. That must never be the experience again. Everyone in this House must pledge to ensure that the Minister delivers on her 2011 commitment. There can be no rolling back on it.

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