Dáil Éireann debate -
Thursday, 9 Apr 2009

Vol. 680 No. 2

Cystic Fibrosis: Motion.

Deputy James Reilly

I move:

That Dáil Éireann:

noting:

that Ireland has the highest incidence of cystic fibrosis in the world;

that Irish patients experience a much more severe genetic mutation of cystic fibrosis than that experienced by patients in other countries; and

that a person born in this State with cystic fibrosis has an average life expectancy which is many years lower than a patient suffering from cystic fibrosis in Northern Ireland or the United Kingdom;

recognising:

that in January 2008 the Minister for Health and Children and the HSE promised to fast track the development of 14 single rooms by the end of the summer, as an interim solution to the bed problem, however only eight beds have been delivered;

that the HSE planned for the roll out of national neonatal screening service for cystic fibrosis in its 2008 national service plan, however this has not happened; and

that funding for the development of a 120-bed development at St. Vincent's Hospital, of which approximately 30-34 beds were to be dedicated for cystic fibrosis patients, has been delayed until 2011 at the earliest;

calls on the Minister for Health and Children and the Government to:

instruct the HSE to commence immediately the development of the urgently needed and life saving cystic fibrosis unit at St. Vincent's Hospital and thus provide 34 inpatient single ensuite beds as part of a 120-bed development at St. Vincent's Hospital so that these facilities will be available in 2011.

I wish to share time with Deputies Shatter, Creighton and Enright and Crawford.

An Ceann Comhairle

That is agreed.

Deputy James Reilly

This motion comes to the House because the needs of a distinct group of Irish people, 1,100 in all, who are sufferers of cystic fibrosis in Ireland are not being met by the Government and the Minister who are fully aware of the facts, which are that cystic fibrosis sufferers die up to ten years younger than elsewhere in the western world. Cystic fibrosis occurs in this country with a greater incidence than any other country in the world and our population suffers with the most severe mutation of this illness. These are important facts to bear in mind, with which I will deal later. Cystic fibrosis, as many people know, is a genetic disorder and, therefore, one does not develop it; one is born with it. It can happen that a diagnosis is made late as the symptoms develop and then the disease is detected and diagnosed. This would not happen if we had neo-natal screening, something which we sought in a debate on this issue last year and still await.

Another area we looked at last year was the need for a national register of sufferers with cystic fibrosis. Perhaps the Minister would like to tell us that she has compiled such a register, but she has not. It was the Cystic Fibrosis Association of Ireland which compiled a register for which, thankfully, it received some funding from the HSE. The good news is that we have such a register.

What we do not have, however, is the same outlook for our young people, our citizens who suffer from cystic fibrosis in this jurisdiction, the Republic of Ireland, as our cousins north of the Border, a mere 40 miles or so from this city. They have many more years' longevity to look forward to than our citizens. The reason for this is quite clear and obvious. In this country we do not have sufficient isolation rooms with ensuite facilities where people with cystic fibrosis, who need admission for treatment of their acute infections, can be treated without fear of cross-infection. Cross-infection can occur when a person goes into hospital acutely ill with an infection in his or her chest and while in hospital that person comes in contact with another patient who has a different type of bug and the person ends up with an even more severe infection. The person's stay is prolonged and, as a consequence, very often irreversible damage is done to the person's lungs. We know this can have catastrophic consequences for sufferers from cystic fibrosis. This could all be avoided if ensuite facilities in isolated rooms were provided for people with cystic fibrosis. It is not much to ask and would involve small money in the overall scheme of things, a point with which I will deal later. It is penny-wise and pound-foolish for the Government not to make such provision.

People with cystic fibrosis who could be admitted to an isolation room would go to hospital much more quickly; such patients' concerns about cross-infection often leads them to delay going into hospital for treatment, which has a detrimental effect. Furthermore, the evidence available clearly shows that when people go into hospital for treatment early, their stay is shorter and their remission is longer. The time between that admission and the next admission is much longer than it otherwise might be. This is the evidence of the medical experts.

There is a need to clarify a statement made by Professor Drumm at the Joint Committee on Health and Children, when he stated that in Toronto they have up to six beds for some 600 sufferers from cystic fibrosis and they manage very well. I alluded to this point earlier. Their mutation of cystic fibrosis is not the same as our mutation of it; ours is much severer. It is the most severe mutation and, consequently, we have a much sicker patient population than they have anywhere else in the world, including Canada.

Lest there be any doubt about the veracity of what I am saying, I will read a statement from the Medical Council of the Cystic Fibrosis Association of Ireland where the most esteemed experts in the discipline of cystic fibrosis treatment have stated clearly that best outcomes are obtained by in-hospital treatment and failure to avail of this can have catastrophic effects.

Patients with Cystic Fibrosis have intermittent exacerbations ... [which means worsening of their condition] of their condition and these exacerbations become more frequent with increasing age. Effective treatment of these exacerbations improves health and quality of life and is very important in preventing or slowing the decline in health that otherwise occurs. Some patients with exacerbations may be treated at home or as outpatients. However, many patients will not recover from their exacerbation with outpatient treatment and these patients must be treated in hospital; this is especially so for adults and those with severe disease. Cystic Fibrosis sufferers who need hospitalization should be admitted immediately to hospital; there should be no delay in admitting them. In keeping with international standards and because they are uniquely prone to particular infections, inpatients with Cystic Fibrosis should all be treated in single, en-suite rooms . . .

Implicit in that statement is that such patients should not have to lie in casualty on trolleys for hours on end being exposed to all sorts of other infections.

When this motion was first submitted to the Ceann Comhairle for discussion today, we had confirmed at the Joint Committee on Health and Children last Tuesday week that the badly needed 120-bed unit in St. Vincent's Hospital was not to go ahead. For the sake of clarity, I point out that this unit was to contain 34 single rooms with ensuite facilities for the treatment of cystic fibrosis, a further floor with a day-care centre for people with cystic fibrosis and a further four floors for the care of the elderly. The cystic fibrosis complement of this 120-bed unit on six floors was two floors and, therefore, approximately one third of the cost of unit would relate to cystic fibrosis.

However, the HSE in its wisdom decided not to provide funding out of its budget which was promised by this Minister last year. We are told it was promised by the Minister in person to Ms Orla Tinsley, a young lady who suffers from cystic fibrosis, who has written about it extensively in the print media, namely, The Irish Times and other newspapers, and who has also given many interviews. Her campaign at that time took its toll on her, but she felt that she had achieved an outcome, namely, that this unit would go ahead come hell or high water and that the injurious effect she suffered as a consequence of her endeavours on behalf of the cystic fibrosis community were worthwhile.

The Ceann Comhairle can imagine her dismay to read the transcript of the Oireachtas committee meeting last Tuesday week to discover that this money would not be forthcoming. I had a discussion with the Minister following that in the Chamber and I asked her why she would put Ms Tinsley, her family and other sufferers through all of this again, why they would have to come out on the streets again and Ms Tinsley would have to raise the issue against on radio and on the "Late Late Show", with all the impact that would have on her. It is not fair that this should have to be done. I am sure that it has taken a toll on her health again, as it did last year. Sadly, two of Ms Tinsley's friends who spoke so passionately and articulately on Joe Duffy's radio show last year are no longer with us. I plead with the Minister not to delay this project further because we do not want to lose more young people unnecessarily. We must ensure on this occasion that the project goes ahead and that these brave young people and their distraught families are not forced onto the streets and the airwaves again in another six months.

I have gone out to St. Vincent's Hospital and visited the facilities there. There is no question or doubt that the only real solution to this problem is the provision of this new unit. This development was supposed to be a quick build that would be completed by the end of 2010. It was anticipated that cystic fibrosis sufferers would get approximately 30 beds — we know, specifically, 34 — and the remainder would be divided among other specialties. It will have an enormous bearing on longevity for the many people suffering with cystic fibrosis in this country, and would go a long way in addressing the oft-quoted ten-year gap.

The medical team at St. Vincent's are enthusiastic, as are their nursing colleagues and they are backed up by the hard working management team. They are ready and waiting, all they need is the Minister to sign the order or instruct the HSE to do so. The site at St. Vincent's is congested and there is little room for expansion. This unit will be six floors high and will go a long way to relieve the congestion in the accident and emergency unit — some 62 beds are currently unavailable through delayed discharge, and to have another 40 beds or so for the care of the elderly would have a major impact on that situation.

I mentioned that this two-floor unit would only constitute a third of the cost. The original cost was to be €40 million and the Minister has alluded to the fact that building costs have come down 20% to 25%. The new figure should therefore be around €30 million, only €10 million of which would relate to the CF unit.

I want to place on the record here another serious situation in St. Vincent's Hospital, relating to the haematology unit. The unit, which caters for people with leukaemia and other serious blood disorders, has been closed for nearly a year to admissions for patients who suffer with neutropaemia. This is a condition of low white cell count, which predisposes a sufferer to infection and makes it very difficult for him or her to fight infection, particularly bacterial. It was closed because of two incidents of VRE, vancomycin resistant e.coli, which is a particularly nasty bug that can be lethal. The concern is that with one toilet to serve this unit, the hospital could not take the risk of admitting people. This has caused enormous hardship for people with leukaemia and many other blood disorders and I would ask the Minister to address this issue. That is why I am raising it here today. It is a separate issue from cystic fibrosis, but is, nonetheless, very important.

The issue of the treatment of cystic fibrosis sufferers has been well highlighted by the great efforts of Cystic Fibrosis Association of Ireland, Orla Tinsley and others, in the paper media, television and the radio. The ordinary people of this country, because of that campaign, know about it and fail to understand why the Minister would allow the HSE to cancel the plan and why she has reneged on her promise. I am glad that she appears to have had yet another change of heart and I would like to congratulate all the aforementioned people on the success of their campaign and, in conjunction with this motion, the net effect appears to be that the Minister appears to have reversed her decision.

I want to digress for a moment because there has been a good deal of talk about the transplant situation in the country. I want to put on the record some information that might clarify the situation for people. Historically, everyone knows that cystic fibrosis patients on the Newcastle and Dublin lists for transplants request people to donate organs. The UK transplant authority is the one that does not allow this. In 2007 the Mater had four transplants, six CF patients waiting and three of these unfortunately died while awaiting transplants. In Newcastle the figures were four transplants, 18 CF patients waiting and six deaths. In 2008 the Mater had four transplants, 13 CF patients waiting and three deaths. In Newcastle the figures were six transplants, 15 CF patients waiting and six deaths. That is a discussion we need to hold to discover why we were not more successful. I know there are technical difficulties and that many of the organs available to the transplant service very often come from young males of say,5' 10" or six feet in height. There are technical issues involved in transplanting a lung from somebody of that size into someone, say, 5' 1 or whatever.

The Cystic Fibrosis Association of Ireland has given a cautious welcome, and well it might be cautious. This is a Minister who makes promises but thinks nothing of breaking them. She did it with cystic fibrosis patients and Orla Tinsley in a very personal way and she also did it with the young women of Ireland by promising them cervical vaccination in August and reneging on this in November. This motion is very clear in its intent and content but if the Minister seeks to oppose it and amend it, and worryingly inserts a term of nine months before building would commence, we need to be very cautious. I fail to see why we should have to wait nine months before building begins. Tenders, I am told, are ready to go, so why cannot the building start during the summer?

However, one must point out equally that this new method of funding carries with it many dangers, especially if stipulations within the tender document make it impossible for builders to tender. Such issues as failing to allow for the cost of interest to finance this programme of building or failure to provide an absolute written guarantee of payment on completion by the HSE, would obviously impact on this.

Another deep concern for people, in the current climate, is in relation to both banks and builders. One must question how many building firms will be in a position to self finance such a project and how many banks will be willing to back them. We will have to watch this space very carefully and monitor every step, ensuring in particular that there are no unreasonable stipulations in the tenders or contracts. This, we in Fine Gael, promise to do and I will quote the father of medicine, Hippocrates, who said: "First, do no harm", for clearly failure to progress this project will do the ultimate harm to people with cystic fibrosis in this country.

I commend the motion to the House.

Deputy Alan Shatter

On occasions in this House, for the sake of political hyperbole, we engage in mock outrage. All Members of the House do it. On this issue, however, I am totally outraged at the conduct of the Minister and the Government. I believe the Minister should hang her head in shame at the manner in which she has dealt with those who suffer from cystic fibrosis.

I do not believe anything the Minister says about this issue can be relied upon. I do not believe that in dealing with this issue in the past in this House, the Minister has been truthful. I do not believe credibility should be given to the announcement made by the Minister at the start of this week as a response to the motion before the House today. I say all of this with some regret. I believe cystic fibrosis sufferers and their families have become pawns in a political game played by the Minister and this Government who respond in an appropriate media-friendly way when put under pressure and then entirely renege on commitments given both inside and outside this House.

I believe the Minister has betrayed the approximately 1,100 people in this country who suffer from cystic fibrosis, and those who have prematurely died during the lifetime of a succession of Fianna Fáil-PD Administrations and the present Fianna Fáil-Green Party Government. In a very similar debate in this House on a motion proposed by my colleague, Deputy Reilly — I spoke after him, as I do today — on 5 February 2008, we addressed all of these issues and solemn commitments were made by Government. However, in case the Minister might want to get off the hook, she of course was not in the House for that debate. The Minister of State, Deputy Devins, was in the hot seat to respond. The Minister was in the House on 31 January 2008, however, when I tabled a priority question to her on the plight of patients who suffer from cystic fibrosis. The stature of this House is undermined by the freedom Ministers believe they possess to mislead Members and the general public. This is a House to which Ministers are democratically accountable under our Constitution. The Minister for Health and Children and a succession of Fianna Fáil-led Governments have undermined the House and its workings and the concept of constitutional accountability.

In the context of cystic fibrosis sufferers, they believe they can freely tell lies to get out whatever embarrassments they encounter. I expressly refer to an exchange I had with the Minister on 31 January 2008. I asked her about the new services she proposed to provide to adults and children suffering from cystic fibrosis, including the lung transplant unit, and pointed out the need to encourage people to carry organ donation cards. Her response, while largely general in nature, dealt specifically with St. Vincent's hospital, in which regard she stated:

The HSE is currently fast-tracking the redevelopment of a ward which is adjacent to the main cystic fibrosis treatment area. The project is to commence within the next few weeks and will provide six single rooms. On completion, additional work will begin to provide a further eight single rooms. This will result in a total of 14 single rooms for cystic fibrosis patients by the end of the summer [of 2008].

That was a clear statement of the Government's intent for what were to be temporary facilities. She went on to state:

In the longer term, a new ward block is to be built, which will include 120 replacement beds in single en suite accommodation, including accommodation for cystic fibrosis patients. Planning permission has been obtained, financial provision has been included in the HSE capital plan and the contract is to be awarded this year. It will be a condition of the contract that the design build period is to be not more than 24 months from the date of contract award.

I questioned the Minister on the timeframe and she confirmed her earlier response by stating:

I can certainly acknowledge that the facilities we have in place are not what they should be. However, I equally acknowledge, as have many of the families and the organisation, that the services have greatly improved, particularly with regard to the employment of clinical expertise. . .

The measures being taken at St. Vincent's Hospital, which will be completed by the end of the summer, are only temporary. It was the hospital's wish that the cystic fibrosis facilities would be part of the 120-bed facility to be built there. For many reasons, the hospital did not believe it was appropriate to build a cystic fibrosis unit separate from the 120-bed facility. That is the reason a modular-type facility will be put in place and ready by the end of the summer.

She later reiterated that the contract would be awarded in 2008 and that the facility would be completed within 24 months. I put it to her that it would take three years from the date on which the contract was signed to construct the facility. In other words, it would not be available until 2011. She replied:

No, it will not. The contract will be awarded in 2008 and the facility will be completed in 2010. Nobody has said any different.

How much more explicit can one be?

Deputy Mary Harney

Why was it delayed?

Deputy Alan Shatter

An absolute commitment was given in this House by the Minister that a facility will be in place by 2010 but she has since changed her mind. The temporary facilities are not fully provided. She prevaricated and concealed what was happening and the HSE did likewise. As of ten days ago, this project was not being progressed. On Monday she announced that it would proceed in a unique way. A developer or builder is being asked to self-finance the entire project and the Government will get around to paying for it once it has been constructed. The Minister is aware that a project of this nature will cost between €30 million and €40 million and that it is Government practice to make staged payments. In view of the current financial climate and the difficulties facing this State, banks will not be falling over themselves to fund a developer on this project. She knows that her announcement may come to nothing, therefore.

In this morning's Daily Mail, the director of tendering and construction at the Construction Industry Federation, Don O’Sullivan, warned that the proposal was not sustainable, stating: “I would expect to see a very good response from the building sector to this project, but the way it is being done is not feasible in the long term.” I believe the Minister’s announcement is another con job. She will betray once again those who suffer from cystic fibrosis. Not only should she hang her head in shame but she should also resign because she has proved herself unfit for office and her words cannot be relied upon even when given unconditionally in this House on a manner of life and death.

Deputy Lucinda Creighton

I am grateful to Deputy Reilly for putting this motion before the House. I hope Deputy Shatter is wrong in saying that Monday's commitment by the Minister to deliver the project in St. Vincent's hospital is a con job. This is literally a matter of life and death for many people, and young females in particular. It is frightening to think this unit, which held out the prospect of solace and hope, will not be built.

Last week Deputy Reilly and I visited the cystic fibrosis facilities in St. Vincent's hospital and inspected the plans for the new unit. There is great excitement among front line staff about the unit because they have been part of the process in terms of working with architects to design a state-of-the-art facility which will deliver life saving services to their patients. We also visited some of the relatively new isolation rooms and saw the potential for prolonging the lives of people suffering from cystic fibrosis through providing them with decent health care. We spoke to several consultants, one of whom moved me with stories about the recent fatalities of three cystic fibrosis patients, all of whom were young women. That takes a toll not only on families and loved ones but also on the staff who are doing their best to provide first class treatment in substandard conditions.

I am more than aware of current budgetary constraints and acknowledge the Opposition's responsibilities in this regard. We cannot call for reductions in spending or controls on the public finances while demanding that every service be protected. As I said at the outset, this is a matter of life or death; it is not in any sense an optional luxury. This project must go ahead and, as Deputy Shatter pointed out, it has already been long-fingered. I hope the Minister's announcement can be believed and delivered upon. I hope the Construction Industry Federation is wrong, but we need more than words. We need concrete commitments so that the desperately needed cystic fibrosis beds in St. Vincent's Hospital can be delivered.

Deputy Olwyn Enright

I wish to thank Deputy Reilly for tabling this motion. We have the highest incidence of cystic fibrosis in the world, and the most severe type, yet we allocate the poorest resources in Europe to dealing with it. Five or six years ago, I remember raising the case of a young man in Kerry whose brother-in-law was a constituent of mine. He was awaiting a lung transplant but that young boy has since died because he did not get the required operation. We are now in 2009, but we still do not have a transplant office within the Health Service Executive to provide a framework to implement the independent processes needed to enhance the quantity of lungs available for transplant. That has not happened in that length of time and we still have some patients going to Newcastle. There have been some improvements in terms of being able to facilitate operations here, but our overall attitude to cystic fibrosis sufferers has not improved and last week's actions do not show any improvement.

Despite the current budgetary context, we had 12 years during which this situation could have been improved. The Minister was in office for all of those 12 years. Last week, she looked in the eye young people who know they will have a much shorter life expectancy that the rest of us. They were told they would have to wait longer, but they do not have time to wait.

Our health staffing levels are seriously inadequate, we have an unbalanced service which is thinly distributed and we have too many small units. The biggest issue for cystic fibrosis patients is a lack of isolation facilities. The Pollock report, which was published in 2005 when we still had money and were wasting it — I think it was around the time we announced decentralisation — said that all cystic fibrosis patients should be in single, en suite toilet facilities to prevent the transmission of dangerous organisms. However, nothing was done about it at that stage.

I hope the Minister's commitment this week will come to pass so that the unit will be provided within the stated timeframe. I am sceptical about it, but I hope it happens. In the meantime, what will the Minister do about the six interim beds that were promised? Some 14 in total were meant to be delivered by the end of summer 2008, so will they come on-stream in the meantime? Can the Minister give a clear commitment that the unit will be delivered in the stated timeframe?

I have often heard the Minister say that there is no low-hanging fruit in health and I appreciate that because it is a difficult portfolio. Looking back at what happened in Portlaoise in autumn 2007 and listening to "Morning Ireland" today about what went on in Ennis, at least those awful things could be described as system failures. They were scandalous but it was much more difficult to say they occurred because of a choice that was made. In this instance, however, it is about choices. I am glad the Minister did a U-turn on the decision to cancel that unit. The choice that was made last week said, more or less, that 25 more young CF sufferers will definitely die this year, given last year's statistics. I do not know what it is like to grow up being aware that if I had the good fortune to live a few miles up the road in Northern Ireland I would live at least ten years longer. I do not know how that feels, but I do know from speaking to Orla Tinsley and families and patients with cystic fibrosis how they feel. I ask the Minister to try to remember that when she is making decisions and choices in this respect.

Deputy Seymour Crawford

I want to thank Deputy Reilly for putting this issue on the agenda today. I have no doubt that this motion, and the work of people like Orla Tinsley, made the Minister do a U-turn last week. I will believe it, however, if and when the service is delivered. As someone living in Monaghan where we have seen so many promises and U-turns, I know this better than most. We want to see everyone being treated equally on this island, but it is unfair that if CF sufferers live a few miles from my home — in Tyrone, Fermanagh or Armagh — they will have a chance of living ten years longer than if they live in Cavan or Monaghan. I ask the Minister to consider this since we are trying to do things on an all-Ireland basis. Our Department of Agriculture, Fisheries and Food co-operates on all animal health issues with its Northern Ireland counterpart, so surely we can have some co-operation in the area of cystic fibrosis to ensure that people in the Border region are facilitated to use such services in Northern Ireland where they are available.

While the Minister has no control over the autonomous HSE, I see from reports that it does not want this matter dealt with on a regional basis. The HSE wants it to be centralised, but I ask the Government to be careful about that. Some 1,100 people suffer from cystic fibrosis here, which is a serious issue. I have watched patients dying from other terminal illnesses, including muscular dystrophy, and their families rally around them. It is extremely difficult to see a young person dying, who might have had a chance of living ten years more with proper treatment. I urge the Minister not to break her word on this issue. She must find the necessary funding so that the CF unit can be built in time. It has not happened in the Killeshandra health area and other parts where promises were made.

The most laughable promise of all was made last week when the Minister for Education and Science, Deputy Batt O'Keeffe, announced a €7 million project for a new school in Kingscourt. It is the seventh time that project has been announced. Seemingly, he was able to find the money for it, while the Minister for Health and Children could not find funding for the cystic fibrosis unit, which is extremely important. For God's sake, the Minister should keep her word for once and ensure that this service is delivered.

Deputy Frank Feighan

I thank Deputy Reilly for bringing this serious motion before the House. Many promises have been made over the years, but it is certain that in this case the Government has reacted to interest groups and political pressure. People vote for Governments to act, not to react. I must admit that when she took over from the previous Minister for Health and Children, Deputy Harney was a welcome breath of fresh air. Some 200 reports had been commissioned at a major cost to the taxpayer and involving long delays. Most of those reports were commissioned to stall necessary progress. The Pollock report was an independent review of cystic fibrosis services in Ireland, which highlighted findings of inadequate staffing and underfunding.

I appreciate that the Minister has a difficult job to do in reforming the health service. When she delivers I will compliment her, but on this occasion cystic fibrosis sufferers in the Twenty-six Counties were let down. As has been highlighted, CF patients north of the Border live ten years longer than those in the South. The shorter lifespan here is a disgrace.

Many organisations are active in various health areas. My father was on kidney dialysis. I pay tribute to groups involved in this and other areas such as multiple sclerosis. They provide an important service which the Government should deliver. For example, they organise flag days and make available resources. While the Department works closely with such groups, much greater co-operation is required.

The recent announcement on the new facility for the treatment of cystic fibrosis gives fresh hope. I assume it has been made candidly and openly and I look forward to the Minister's delivering on the Government's promise. We must look to the future rather than dwelling on the past and I hope cystic fibrosis sufferers in this country will have a more secure future than has been the case to date.

Minister for Health and Children (Deputy Mary Harney)

I move amendment No. 1:

To delete all words after "That" and substitute the following:

"—Dáil Éireann welcomes:

the strong policy priority that has consistently been given by the Government in recent years to the development of services for persons with cystic fibrosis in Ireland;

the fact that building of the ward unit at St. Vincent's Hospital, including dedicated facilities for persons with cystic fibrosis, will commence within the next nine months and will be operational as early as possible in 2011;

the related investments made to date at St Vincent's Hospital, as the national adult tertiary centre for the provision of cystic fibrosis services, involving the recruitment of 19 additional staff and the significant improvement to the physical infrastructure of the hospital, including the provision of eight dedicated single en suite rooms and improved ambulatory care facilities;

the provision of additional operational funding of some €8.4m since 2006 for the development of cystic fibrosis services nationally, and the additional improvements that have been put in place in other adult and paediatric hospitals;

the recruitment of an additional 48 staff since 2006, including additional consultants, nurses and health and social care professionals, to this service;

the expert advice being given on how best to implement a national screening programme for cystic fibrosis in newborns; and

the cystic fibrosis register that the HSE has established to record data in relation to the incidence, treatments and outcomes for persons with cystic fibrosis which will allow, for the first time, for meaningful comparisons to be made with other jurisdictions."

I wish to share time with Deputies Grealish and Ó Fearghaíl. I do not, as a matter of course, take shots at the Opposition in these debates because they are much too important. However, I will not take a lecture of the kind Deputy Shatter, a man who had the most astounding things to say about the shocking slaughter of women and children in Palestine only a few months ago, sought to give us.

The sole reason the project we are discussing was delayed and could not go to tender during the latter part of last year was an eight month delay in the design caused by engagement with the architect for the cystic fibrosis community. It was never the case that the project would not proceed.

I do not accept the analysis that a guarantee from the Government to pay a construction firm would not be attractive to the construction industry as the information available to me is very different. A Government guarantee to pay for a project is as good as money in the bank. Clearly, the project will have to be financed but notwithstanding the current banking difficulties, there is no question that a bank would not forward money on the basis of a Government guarantee to pay on delivery. Many projects in the private sector are delivered precisely in this manner, with payment made on delivery of the project rather than in a staged manner, which has been the approach traditionally adopted by the State.

I welcome the opportunity to respond to the Fine Gael Party motion, particularly to set out for the House the significant progress made in recent years in developing services for people with cystic fibrosis across the country. I am acutely aware of the challenges that people with cystic fibrosis and their families face in managing their condition. It is very much with this in mind that I have prioritised, not only this week but since 2006, the development of services for people with cystic fibrosis. The focus has been twofold, namely, increasing staffing levels in treatment units across the country and developing and modernising our hospital facilities in order that patients requiring admission can be treated in the best possible environment.

I accept that further improvements are required, particularly at St. Vincent's Hospital which is the adult specialist centre for the treatment of cystic fibrosis. This project was always a priority for the Government and has never ceased to be a priority. No decision was taken by the HSE at any stage to halt or delay it. When it emerged that the timing of capital payments for the project could be an issue, I took immediate steps to ensure it would proceed.

To be fair to the HSE, the organisation's capital budget was substantially cut due to the deterioration in the public finances. With a few minor exceptions, other than contractual arrangements, it did not have sufficient money in its 2010 capital programme to pay for the project. For this reason, we explored the possibility of ensuring the facility could come on-stream in the manner that has since been agreed.

I am very pleased that a focused team of people from the HSE, led by Mr. Brian Gilroy, St. Vincent's Hospital and the Department of Health and Children has come forward with a pragmatic solution to the issue which will allow the project to proceed. In the current challenging economic environment, there will be a keen interest from construction firms in every new project, particularly a valuable one such as this involving a high level of engineering and construction skills. The State is also in a position to achieve great value for money in the current circumstances, as has been acknowledged.

I am confident that the range of developments and improvements which I will outline to the House today will further demonstrate the ongoing commitment of the Government to the delivery of a safer and more appropriate service for people with cystic fibrosis. Cystic fibrosis is an inherited chronic disorder which affects the lungs and digestion of food, leading to frequent chest infections and undernutrition. As Dr. Ron Pollock pointed out in his 2005 report on the treatment of cystic fibrosis in Ireland, "it is the commonest lethal genetic condition in Caucasian populations and Ireland has the highest birth incidence of Cystic Fibrosis in the world." The condition affects many body functions and becomes more severe with age. Males and females are affected in equal measure.

The latest available data indicates that there are 1,161 people with cystic fibrosis living in the Republic of Ireland who are in receipt of hospital services. Approximately 52% of this group are adults and 48% are children. Life expectancy has increased steadily over the past 20 years and continues to improve as new and improved treatments are developed. The oldest person on the registry is 59 years of age and 35 people with cystic fibrosis in Ireland are more than 40 years of age.

Dr. Pollock's report also stated:

Comparison of survival between countries is complicated by the absence of a European Registry recording individual age and vital statistical data for all cases . . . However, trends in survival may be inferred from the trends in median age at death . . . Clearly caution has to be exhibited in interpretation . . . nevertheless Ireland displays a very much higher number of deaths than does England and Wales, and the same is true for the comparison with Northern Ireland.

It was unfortunate that the only information available had to be treated with caution. In effect, there has been an absence of the detailed robust statistics, such as those used in cancer, that are necessary for cross-country comparisons, not only in Ireland. I am pleased we have started to address this matter. An independent registry for cystic fibrosis, funded by the State, has been established which will help us make such international comparisons over time. The registry has been funded annually by the HSE since 2006 and is now in a position to produce relevant data on more than 85% of people with cystic fibrosis. The average enrolment of people with cystic fibrosis in other country registries is approximately 80%. The registry has advised in its most recent annual report that there are insufficient years of Irish data to generate life expectancy and survival curves and, therefore, full comparison with other countries is not yet possible. It is expected that preliminary data will however become available later this year.

The report by Dr. Pollock has been a valuable input into the development of services for people with cystic fibrosis in Ireland. The Government provided additional revenue funding to the HSE of €6.78 million in 2006 and 2007 to develop services. A further €1.6 million has been provided in 2009, including provision for the introduction of a screening programme for newborns. The investment to date has facilitated the recruitment of 48 additional staff, including consultants, nursing and allied health professionals across a number of hospitals. These are as follows: St. Vincent's Hospital; Beaumont Hospital; Temple Street Hospital; Our Lady's Children's Hospital, Crumlin; Cork University Hospital; University College Hospital, Galway; the Mid-West Regional Hospital, Limerick; Adelaide Meath and National Children's Hospital, Tallaght; Our Lady of Lourdes, Drogheda; and Waterford Regional Hospital.

St. Vincent's University Hospital is the national tertiary centre for the treatment of adults with cystic fibrosis. We have allocated additional revenue funding of more than €1.3 million to the hospital since 2006 to support the development of services for cystic fibrosis patients. This additional funding has facilitated the recruitment of 19 additional staff to date. In addition, the physical infrastructure has been significantly enhanced through a series of developments, including the refurbishment last year of accommodation to provide eight single en suite rooms for the exclusive use of people with cystic fibrosis.

Furthermore, the first phase of the overall hospital redevelopment, which has been completed, includes a new ambulatory care centre. This facility includes dedicated accommodation which is used for the care of cystic fibrosis patients who do not require admission. The unit allows for appropriate segregation of patients to ensure improved infection control.

The new accident and emergency department at St. Vincent's Hospital also includes single room accommodation which may from time to time be used for the care of cystic fibrosis patients under the specialist team. St. Camillus's ward was also fully refurbished and redesignated to provide 15 additional respiratory beds. In total, 63 beds at St. Vincent's Hospital are used for respiratory or cystic fibrosis services.

The next stage in the development of St. Vincent's Hospital will involve the building of a new ward block to replace existing accommodation. The new facility will consist exclusively of single rooms for inpatients. The facilities required for the cystic fibrosis community will be a decision for the medical team at the hospital to make from time to time. The provision of en suite, single rooms for inpatients is the hospital of the future. The new facility will include appropriate isolation facilities and accommodation for cystic fibrosis patients as required.

I am pleased we have found a way to allow the project to proceed to tender so that it can be operational as early as possible in 2011. The project will proceed on the basis that payment to the contractor will be made at the end of the construction phase. This is a different way of funding the project as it involves the construction company financing the development up to the final phase of construction. The method previously envisaged for this project would have involved staged payments throughout the construction period. This represents a genuinely innovative way to deliver the project. In the current challenging environment we need to find new solutions and devise new ways of progressing important projects such as this. This is one of them. The project has been always a priority for me. I now want to see it progressing with the urgency that is required.

The HSE is also working with St. Vincent's to identify opportunities for patients who do not require tertiary level care to be treated closer to home. Arising from the significant regional investment made since 2006, patients can increasingly avail of services at local level. This should help to reduce the level of demand at St Vincent's, and ensure the hospital can focus increasingly on the provision of highly specialised tertiary level care. The Government has also supported a range of other important measures to improve the quality of services for people with cystic fibrosis. These include screening and the establishment of the national heart and lung transplant programme at the Mater Hospital.

The HSE's expert advisory group on children and families has produced a very useful draft policy document on the introduction of a cystic fibrosis screening programme. Its recommendations include the establishment of a steering group to oversee its implementation and to ensure coherence with the development of other relevant services. The steering group is to be established later this year and will oversee the roll out of the screening programme. Funding for the introduction of the screening programme for newborns has been set aside in the 2009 service plan and will begin this year.

The national heart and lung transplant programme at the Mater Hospital has been in place for a number of years. The programme services patients with a variety of conditions, including cystic fibrosis. Ireland also has a formal agreement with Freeman Hospital in Newcastle for heart and lung transplantation procedures. Regarding organ donations, the protocol is that all heart and lung donor organs are first offered to the transplant unit at the Mater Hospital. If these organs cannot be utilised by the Mater Hospital, the national co-ordinators notify the Freeman Hospital as appropriate.

The first patient with cystic fibrosis received a transplant in the Mater Hospital in 2007. It is well documented that finding suitable donors for cystic fibrosis patients can be very challenging. There are stringent clinical criteria for the acceptability of organs for heart and lung patients, in particular for young patients. The particular challenge for Ireland and the UK is the availability of good quality double lungs. This is supported by the small number of patients with cystic fibrosis who are transplanted overall. The HSE aims to optimise donation and recovery to ensure that programmes like the national heart and lung transplant service continue to expand and meet the needs of our patient population.

The developments I described are comprehensive, important and represent tangible evidence of the commitment shown by the Government to improving services for cystic fibrosis patients right across the country. I am conscious that further improvements are required, including the need to develop community outreach services and to facilitate the treatment of patients outside the hospital setting where appropriate. Taken together, the developments that have already taken place and the developments currently at planning stage represent a significant improvement in a three year period in the quality of services for people with cystic fibrosis.

Deputy Noel Grealish

I am very happy to be taking part in this debate today.

Since last Friday, when the Opposition notified the House that it intended to use Private Members' time to raise its concerns about cystic fibrosis, the Minister, Deputy Harney made a significant announcement regarding the development of the facility at St. Vincent's Hospital in Dublin. The announcement has been welcomed by the Cystic Fibrosis Association and I welcome it today. The announcement makes it clear the Government continues to be fully committed to developing the specialist unit for cystic fibrosis at St. Vincent's Hospital and is determined to have it in place early in 2011.

I can understand the concern expressed by people with cystic fibrosis and their families in recent weeks when it was reported that there might be a significant delay in building this facility. However, knowing the Minister, Deputy Harney, as I do, I never doubted for a moment that she would explore every single avenue to ensure the commitment to build this facility would be honoured at the earliest possible time.

It is understandable that people with cystic fibrosis feared there might be a long delay when it was made clear to the Joint Committee on Health and Children two weeks ago that there were problems regarding getting the capital funding to pay for the new block. However, at no stage did the HSE say a decision had been made to put off the construction of the building. In an article in The Irish Times yesterday, it was stated the HSE had announced that the construction would be delayed until 2011 at least, but that is not correct. The HSE made it clear there were problems with the money, but there was no problem in terms of a determination to find a solution. For weeks there has been considerable discussion involving the Department of Health and Children, the HSE and St. Vincent’s Hospital aimed at finding a way to deliver the building on schedule, despite the difficulties with the funding. I compliment the Minister, the HSE, St. Vincent’s Hospital and others on coming up with a creative new solution to make sure this 120 bed new ward block is built and in place by early 2011.

The HSE will put the project out to tender in a number of weeks. It will invite interest from builders who will construct the new unit and essentially take payment for the building when it is completed. The announcement shows a capacity for lateral, creative and strategic thinking, backed up by a method and organisation that will have to be the hallmark of our health services as we move forward in these difficult economic times.

I am proud to be able to say that since Deputy Harney became the Minister for Health and Children there have been many significant developments in upgrading the level of care available to people with cystic fibrosis. It was she who identified the development of cystic fibrosis services as a policy priority in the wake of the Pollock report. The Health Service Executive multidisciplinary working group, which was set up in the wake of the receipt of the Pollock report, targeted a number of hospitals around the State to be developed as specialist centres. St. Vincent's Hospital was designated by the Minister as the national adult referral centre, while the Children's Hospital in Crumlin was designated as the national referral centre for paediatric cystic fibrosis.

Some €7 million in additional funding was provided to develop services between 2006 and 2007 alone and, as the Minister explained, in many centres around the country extra staff have been provided, across a range of disciplines, to provide specialised care for people with cystic fibrosis. Professor Brendan Drumm, speaking to the Joint Committee on Health and Children two weeks ago, said there has been a significant spend in tackling cystic fibrosis across the country and that we have developed what are, by international standards, very large multidisciplinary teams right across the country. However, he added, "we hope to see the dependency in bringing young people with cystic fibrosis to hospital diminishing rapidly". As he put it, the system should be focused, treating people with cystic fibrosis in their homes rather than having them come together at risk to themselves.

While it is understandable and correct that there be a strong concentration on the delivery of the new cystic fibrosis unit in St. Vincent's Hospital in Dublin, it is also important to recognise the real improvements that have taken place in recent years to provide care, in the optimal setting, for people with cystic fibrosis.

Opposition parties have criticised the current proposal regarding the development at St. Vincent's Hospital as being vague. I reject that and will tell the House why. As we enter these more difficult economic times, what matters most to policymakers is having a clear sense of priorities. In the good times people prepared a wide list of all their requirements and naturally lobbied for their delivery. In the difficult times people have to discriminate. They have to decide which services are crucial and then make sure they are delivered. There will be times when beneficial services will have to be denied in favour of other services which are considered vital to the patient.

The Minister, Deputy Harney has made clear that the delivery of the new block in St. Vincent's enjoys the level of vital priority status. I am confident that any obstacle that might present itself will be overcome by the Minister working with the HSE and St. Vincent's Hospital.

Deputy Seán Ó Fearghaíl

I am grateful for the opportunity to contribute, albeit briefly, to this important debate on the provision of services for people with cystic fibrosis in Ireland. While I strongly support the Government motion, I thank Fine Gael for providing us with an opportunity to discuss what is for many young Irish citizens — just over 1,000 of them — an issue of life and death. Given the prevalence of this chronic illness in Ireland, every Member of the House has ongoing personal experience of people directly affected by the condition. We have seen at first hand in our own communities and constituencies the devastating impact this disease can have on the lives of young sufferers and their families.

The manner in which we deal with the issue highlighted in the Government amendment challenges us all directly in terms of our relevance and efficacy as individual politicians and members of political parties. Most of all, however, it challenges the Government, even in the difficult economic climate in which we now find ourselves, to do what is right, decent and humane. Since 2006, as other Members have said, significant progress has been made in terms of additional medical, paramedical and financial support for sufferers. It is generally accepted — with the exception of the isolation units, which the Minister has now confirmed will proceed——

Deputy James Reilly

Yet again.

Deputy Seán Ó Fearghaíl

——that a high-quality dedicated support system is now in place across the country, with St. Vincent's hospital at its centre. In light of calls for more localised provision, we do need clarity, and I urge the Minister and the HSE to address this matter as soon as possible.

In Ireland we have a frighteningly high incidence of this condition. One in 19 people is a carrier, and a child of two carriers has a one-in-four risk of symptomatic illness. The incidence in Ireland is approximately one in every 1,400 babies born. This compares with an incidence of one in 4,000 in the United States; incidentally, the incidence among the Asian-American community is just one in 32,000. The statistics serve to illustrate that this illness must be prioritised in terms of health policy. Due to the high incidence of the condition, we need not just to support sufferers but to build on the expertise developed in this area and work to make Ireland a centre of excellence in the area of CF research and patient management. Already the HSE has funded the development of a CF register to record relevant data which could be put to such use.

With this condition, early diagnosis is key to achieving optimal care and outcomes. Many countries are now implementing neo-natal screening, often included in the Guthrie heel-prick test. This can provide a diagnosis within the first week of life, as opposed to some unfortunate circumstances in which a child could be of school-going age before diagnosis is confirmed. In such cases valuable time has been lost where early aggressive management could have been initiated. It is important, therefore, that we move rapidly to the point where we have universal routine screening for CF at the neo-natal stage. In addition, this early diagnosis would offer parents the opportunity to seek genetic counselling at a much earlier stage than might otherwise be the case.

As with any illness, there are three aspects to patient care which need consideration; namely, the physical, psychological and social elements. As politicians the greatest impact we can have is by ensuring that an appropriate and safe environment is provided to minimise the exposure of susceptible patients to potentially life-threatening infections. Hence the need to proceed urgently with the delivery of the specialised units. The psychological well-being of a person is as important as his or her physical health. A child with CF can feel isolated, as can any child with a significant chronic illness, due to prolonged hospital stays. The childhood of those with CF tends to be shorter than most because of the realities of serious illness. Teenage years are difficult at the best of times, but for the CF patient there is the added realisation of premature mortality. It is essential, therefore, that we provide the necessary psychological and counselling supports and ensure an environment exists in which CF patients can live their lives to the full and realise their true potential.

We know the impact of this disease on patients' loved ones, and we therefore acknowledge that the introduction of the dedicated units will at least significantly reduce the fear that is currently associated with hospital admissions and the risk of hospital-acquired infections. In the pioneering manner in which the Minister, Deputy Harney, is proposing to address this matter, the Government is demonstrating, as it must, a true and tangible commitment to giving CF the high priority it deserves.

It would be remiss of me not to pay tribute to the young Kildare woman Ms Orla Tinsley, whose courageous campaigning and highly effective communication skills have resulted in unprecedented levels of public and political awareness of CF, to the benefit of sufferers throughout the country. In doing so she has by her personal example demonstrated to other people with this condition how substantial their personal achievements can be. She has also shown young people in general what can be achieved by targeting their energy, ability, idealism and clarity of thought towards issues of importance in our society. I commend the Minister on her pioneering action and I commend the amendment to the House.

Deputy Jan O’Sullivan

I wish to share my time with Deputies Upton, Tuffy and Ó Caoláin.

I regret the Minister is no longer in the House to hear my first point. While I profoundly disagree with the various comments Deputy Shatter made about Palestine, I consider it entirely unworthy of the Minister to seek to devalue his contribution in this important debate by linking it to what he said about a totally unrelated issue.

Deputy James Reilly

Hear, hear. She is deflecting from her own inadequacy.

Deputy Jan O’Sullivan

I am sorry the Minister is not here to hear this.

The difference between Orla Tinsley and the dodgy developers whose loans are being taken on by the taxpayer is not just that she is courageous and that she has cystic fibrosis. It is that she has become a household name and they have not. We all met Ms Tinsley outside the Dáil last week. She said she was sick of having to expose her personal life and her health in public again and again, having to talk about her friends who are now dead, and having to fight battles they thought they had already won. This is the kind of country we are in now. A solemn promise made by the Government to deliver a vital health unit at an agreed time can be casually cast aside. It might be delivered a year later if the private sector is so minded. Ms Tinsley knows that if the unit is to be in place in 2011, she will probably have to go out again to tell people about the reality of hospital stays for CF sufferers.

People who are sick are among the little people in this country who have to take the knocks. On the other hand, those who took out large loans from the banks to make more money than they already had — which was more than enough already — and got caught in the property crash remain anonymous. If they continue to live a high life while the taxpayer takes on their bad assets, we will not know about it, because we will not know who they are. They are unlikely to have to plead their case outside the Dáil as the CF sufferers did. The hurt they will suffer is on their "first call equity", according to Peter Bacon this morning on "Morning Ireland". I do not know what that means, but I doubt it will hurt as much as the pain of those who wait in the health system, including those with CF. I do not think the Government understands how angry the public are as a result of this. We need a new Ireland in which these people are proportionately included in sharing the pain.

I commend Deputy Reilly and Fine Gael on tabling this motion, which is very important not just for those who have CF and their families, but for the kind of Ireland we want to live in, where promises are kept and where those who need the health services to deliver the best of care to them do not have to take to the streets. I am thinking of the husband of the late Ann Moriarty, who will have to face the media later today when the report into her death and Ennis General Hospital is published, or Susie Long, who first went on the airwaves under a false name because she did not want to be publicly exposed but subsequently felt obliged to. I am also thinking of Rebecca O'Malley and many others who have had to fight for their rights and for the recognition of their needs in the health service, while other people who have bled the country dry can stay anonymous. This is appalling, and many people in Ireland are beginning to wonder what we have become. This debate is central to the issue.

Deputy Shatter quoted his question of 31 January 2008 to the Minister. I also had a matter on the Adjournment that day, and the response, delivered by the then Minister of State, Deputy Devins, was exactly the same as that read by Deputy Shatter. When I was making my contribution that evening I asked for a definite commitment to the building of a special unit, and the Minister of State gave a solemn promise that it would be delivered within the 24-month timeframe. That promise was not delivered.

While we welcome what the Minister has said, we share the scepticism of cystic fibrosis patients, who do not know whether they can believe that this new commitment will be delivered upon. Sufferers from this condition are vulnerable enough without having to worry about whether adequate facilities are in place to provide the treatment they will need throughout their lives.

We have been reminded in recent days that Ireland has the highest incidence of cystic fibrosis in the world, as well as the worst strain of the disease, but that our treatment facilities are among the poorest in Europe. I thank the Minister, Deputy Harney, for putting on record the commitment to introduce a screening programme for newborns, for which €1.6 million has been provided by the Health Service Executive in its 2009 service plan. However, those of us who deal with health matters are aware of instances where money has been set aside for new developments in areas such as palliative care, mental health provision and disability services only for that money to be subsequently used for other purposes. We will watch carefully to ensure the promised screening service is delivered.

In the course of my contribution on 31 January 2008, I referred to the views put forward by Dr. Gerard Canny of the cystic fibrosis unit at Our Lady's Hospital for Sick Children in Crumlin. Dr. Canny has called on several occasions for the introduction of a screening programme, which he observed was in place in Northern Ireland since 1983. In a letter to the newspapers on 31 January, Dr. Canny argued that what is needed is a continuum of care from babyhood to adulthood, with treatment provided by multidisciplinary teams and patients cared for in dedicated inpatient wards with single en suite rooms to prevent cross-infection.

The Cystic Fibrosis Association has stated in recent days that unless a stand is taken on this issue now, there can be little hope that the required facilities will be put in place in Galway, Limerick, Cork, Waterford, Castlebar, Drogheda and Dublin. There is much scepticism about the promise made by the Minister and reiterated today, mainly because the initial commitment will not be fulfilled within the agreed timeframe and the fulfilment of this new promise will be dependent on the good will of the private sector in accepting a payment arrangement devised by the Minister and the Health Service Executive.

This is not the way we should deliver public health services, particularly for people as vulnerable as cystic fibrosis patients. There is no certainty for these patients, a point emphasised by Orla Tinsley in her response to the latest development. She began her statement by thanking the Minister, Deputy Harney, but went on to describe "mixed emotions of relief and uncertainty". This uncertainty must be a feature of our response to any promises given by the Minister. She has already broken her initial promise to cystic fibrosis patients; she broke her promise regarding the introduction of a HPV vaccine; and she has broken various promises in regard to mental health services and services for people with disabilities.

Therefore, while we welcome the indication that the promised unit will be delivered, albeit a year later than originally promised, the problem is that we cannot be sure this will be done. People with cystic fibrosis, whose lives are threatened on a daily basis by their illness, can have no certainty in this regard. In her articles, Orla Tinsley describes in detail what it is like to go into the accident and emergency unit of a busy acute general hospital and to be told that no isolation beds are available and that she must endure the threat of cross-infection. Cystic fibrosis patients are terrified to be in hospital but equally terrified not to go to hospital because the nature of their disease is such that hospital care is necessary at times of acute illness.

I fail to understand how it has come to this. The Minister offered an explanation today when she spoke of consultation on the design of the unit. This is the first I have heard of it. Why has this suddenly been placed on the table? Whatever the reason for the delay in the provision of this vital service, what is equally disturbing is the casual manner in which the change of plan was communicated. Included in a raft of documentation delivered to the Oireachtas Committee on Health and Children in response to a range of queries was the casual revelation that, after all, the Health Service Executive did not expect to be able to deliver on its promise until at least 2011. This shows callous disregard for the effect of this information on those whose lives are directly affected by it. I reiterate our strong support for the Fine Gael motion. Cystic fibrosis patients deserve better than this.

Deputy Mary Upton

I thank Fine Gael for bringing this motion before the House. St. Vincent's Hospital is the national centre for the treatment of adult cystic fibrosis patients. I acknowledge a personal interest in the debate in that for a period of 15 months, I was a regular visitor to the cystic fibrosis ward in that hospital. I assure anybody who has not been there that the descriptions by Orla Tinsley and her friends of the appalling conditions there are no exaggeration.

Cystic fibrosis patients, who are highly vulnerable and susceptible to infection, are frequently placed in a six-bed ward, often alongside elderly incontinent patients or patients with various infections. It is a very high-risk environment for them. This situation is entirely unacceptable. Nevertheless, the medical and ancillary care afforded these patients is superb. Everybody who has any part to play in delivering inpatient services is wonderful and above reproach. They do everything they can to support the patients. Like my colleagues, I tentatively welcome the announcement by the Minister that the beds will be delivered in 2011. However, as Deputy O'Sullivan said, we must be sceptical in light of the various promises that were not delivered. We will carefully monitor progress on the delivery of this commitment, which is already behind schedule.

It is not just St. Vincent's Hospital that requires support for cystic fibrosis patients. Many other hospitals throughout the State, including paediatric hospitals and hospitals with paediatric units, badly need isolation facilities. Parents have spoken to me about the conditions at Our Lady's Hospital for Sick Children in Crumlin, for example, which are intolerable for many cystic fibrosis patients. No such patient wants to be in hospital unless it is absolutely unavoidable and all of them would prefer to be in their own homes. However, because of the seriousness of their condition and the need for medical intervention, they require periodic hospitalisation. The fear of not seeking treatment versus the fear of going to hospital is a balancing act for them.

Teenagers and young adults are also in the unenviable position of having to consider a lung transplant as the only option for prolonging their lives and ensuring a decent quality of lives. In 2004, a heart and lung transplant unit was formally opened at the Mater Hospital. Ireland also has an arrangement with the Freeman Hospital in Newcastle for the provision of transplants. In 2007, there were 84 successful organ donations in Ireland but from these, only five single lungs and four double lungs were retrieved. Only one cystic fibrosis patient has undergone a lung transplant at the Mater Hospital since the introduction of the specialist unit. One must question the reasons for this. Ireland is the only country in Europe which performs more single than double lung transplants. The Spanish transplant authority recommends that to have an efficient transplant team, 20 transplants must be performed in a year. A similar system is in place in Belgium. In Ireland, however, only 21 lung transplants have been performed since 2005, of which only one was on a cystic fibrosis patient.

Why is there such a low transplant rate in the Mater Hospital? It is not the result of a shortage of donors. We compare favourably to other European countries in this regard and we are all grateful to the families who are generous enough to donate their loved ones' organs at a time of bereavement. Why is there a disproportionate level of single versus double lung transplants? Why is there no transplant co-ordinator in any of the intensive care units in this country? More importantly — this issue has also been raised by Ms Orla Tinsley — why should any CF patient allow their name to be placed on the Mater Hospital lung transplant list given that it is static? This situation needs to be resolved urgently for the sake of patients depending on a life saving operation that simply cannot happen in current conditions.

The Mater Hospital is also the dedicated unit for the management of post-transplant patients, including CF patients. These patients are being denied the opportunity of best practice in that unit because while it has general transplant expertise, there is no dedicated CF expertise. Cystic fibrosis does not go away when a person has a lung transplant. It is important that they receive continuing after care. I would like answers to these important questions on behalf of all the young people waiting and living in hope for a lung transplant.

Deputy Joanna Tuffy

Deputy Jan O'Sullivan referred in her contribution to the type of Ireland we want the country to be. I would like to speak about the type of society which the Minister for Health and Children, Deputy Harney, and the former Progressive Democrats Party wanted us to have. To be fair, they were successful. The society they wanted to build, as partners in Government for the past 12 years, was one where inequality was a necessary part. The Government has done well in making us one of the most unequal societies. While we are not the most unequal society, we are up there in terms of inequality throughout the world.

This philosophy was set out by the former Minister for Justice, Equality and Law Reform, Mr. Michael McDowell, in 2004 whose robust defence of the gap between rich and poor in Ireland was quoted in The Economist . He said then that it was an inevitable part of a society of incentives that Ireland had become. This was in the wake of a UN report which suggested at that time that the Republic of Ireland had become more unequal during its Celtic tiger years. Credit is due to the former Progressive Democrats and the Minister for Health and Children, Deputy Mary Harney, who took on that philosophy in their policies on income tax, privatisation of public services, free marketeerism, the promotion of land speculation and gambling by bankers, the serving of the interests of a few in terms of their economic policies and public private partnerships which are grossly favourable to the private sector. The Government has done well in creating a more unequal society.

When it comes to health, this is very much the type of approach the Minister took in her policies on the co-location of private hospitals. The Health Service Executive, HSE, spent approximately €1.5 billion over six years on private nursing homes in terms of capital reliefs to private nursing home developers and payment for beds in the private sector and so on. At the same time, the number of public beds in the system was systematically reduced.

I was interested to read the statement of the Cystic Fibrosis Association of Ireland in regard to the Minister's latest announcement which included a warning that the new funding scheme outlined by the Minister for Health and Children is so dependent on builders and bankers that it may never go ahead. This new announcement is part of the same old philosophy. I wonder what developers will get out of this. I am concerned that they will be allowed to call the shots. If it is the case that the State will not pay the developers until the unit has been completed, does this mean developers will be able to charge more for the facility? This has been the type of approach by Government for the past couple of years, namely, outsourcing to the private sector developments which end up costing the State much more. Many Members have referred to this announcement as creative, innovative and pioneering. All the Minister has done is re-announce a project, which will now commence later.

On inequality, societies that are more equal are better for everybody in terms of health outcomes. We should be aiming to be a more equal society. We do badly in terms of health outcomes. This is why when push comes to shove a unit like this is dispensable. So many other areas of health, where the most vulnerable will be hit, will be dispensable for this Government, if its record is anything to go by. The type of Ireland we want is one which prioritises projects such as this unit, builds public facilities, provides universal health care and protects the most vulnerable unlike the budget health levy which favours the rich. We must make the most wealthy pay their share towards the building of a proper public health system.

Deputy Caoimhghín Ó Caoláin

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 are 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 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.

Deputy Charlie O’Connor

I would like to share time with Deputies Conlon, Dooley and Kelly and the Minister of State, Deputy Hoctor.

An Leas-Cheann Comhairle

Is that agreed? Agreed. With the indulgence of the House, I would like to wish the Deputy a happy birthday.

Deputy Jan O’Sullivan

And so say all of us.

Deputy Charlie O’Connor

I thank the Chair for his greetings, although I am not sure who told him that today is my birthday. I wish him, all our colleagues and the staff of the Houses a happy Easter.

I welcome the opportunity to make a brief contribution to this important debate. I have listened carefully to the comments of a number of Deputies. This morning, I was impressed to hear our colleague, Deputy Finian McGrath, welcoming the progress that has been made in recent days. In fairness to him, he is clearly acknowledged as a strong campaigner on this issue, particularly with regard to the St. Vincent's Hospital facility. That is the benchmark for this debate. I agree with those who have called on the Minister, Deputy Mary Harney, to continue to engage with the Cystic Fibrosis Association of Ireland, which I compliment on its efforts. I hope she will do so. I am glad the Minister of State, Deputy John Moloney, is here. I know he has a particular interest in this subject. It is particularly important for the Department of Health and Children to continue to listen to the concerns of parents, who should be facilitated because they are in the firing line.

I do not want to repeat the points previous speakers have made. I will put this debate into context. Cystic fibrosis is an inherited chronic disorder that affects the lungs and the digestion of food, leading to frequent chest infections and under-nutrition. It affects many body functions and becomes more severe with age. It affects males and females in equal measure. I understand that for genetic reasons, Ireland has a high incidence of cystic fibrosis, relative to its European neighbours. The latest available data indicate that 1,161 people with cystic fibrosis are living in this country and in receipt of hospital services. I understand that approximately 52% of them are adults and 48% of them are children. I will focus on children's services. Like other Deputies, I am a member of the Joint Committee on Health and Children, which is chaired by Deputy Seán Ó Fearghaíl. I compliment one of the other members of the committee, Deputy James Reilly, on his efforts as far as this issue is concerned. I wish him well.

Members will have heard me speaking about paediatric services on many occasions. During most debates of this nature, I am keen to comment on the future of children's services in the Dublin region, particularly at Tallaght Hospital. In the context of this debate, it is important to point out that Our Lady's Hospital for Sick Children in Crumlin, which is near Tallaght, is the location of the national referral centre that provides specialist services to children with cystic fibrosis. The HSE was approached by the hospital in 2008 with regard to a proposal to develop a four-bedded isolation facility for the inpatient accommodation of children with cystic fibrosis. The hospital indicated there was an opportunity to avail of charitable support which might be pursued immediately and I understand the project is advancing accordingly. Significant investment of over €1 million since 2006 has enabled the appointment of eight consultant posts.

Paediatric services are provided at other centres including Tallaght Hospital which works jointly with the team in Crumlin children's hospital. These services will eventually combine in the new national children's hospital proposed for the Mater Hospital site. That is an agenda for another day.

Investment of almost €700,000 in the National Children's Hospital in Tallaght has allowed for the enhancement of services for people with cystic fibrosis and I am very glad to support that. The hospital also provides an active research programme in cystic fibrosis infection, including national surveillance of infection control and bacteria in cystic fibrosis. For the majority of children who suffer from cystic fibrosis care is delivered on an ambulatory care basis.

The Leas Cheann-Comhairle will be aware that on the north side of the city, Temple Street Children's Hospital is currently developing a dedicated respiratory unit which will comprise a self-contained floor for the care of patients with cystic fibrosis and respiratory ailments. This will include a new laboratory treatment room, consulting rooms and walk-in access to clinical nurse specialists. The unit is due to open later this year.

I prefaced my remarks by stating that such progress has been welcomed. It is important that we give people confidence and hope for the future, even in these difficult economic times. I shall continue to support cystic fibrosis patients and their association.

Deputy Margaret Conlon

I welcome the opportunity to contribute to the discussion today. We must recognise there has been significant progress in recent years in the development of services in all areas of illness but particularly for people with cystic fibrosis. There is always room for improvement and for further advances.

I know and have met sufferers, female and male, young people in their teens and 20s, who are suffering from this disease. I know the considerable challenges and concerns they have and the dilemma they face on a daily basis. We have been modernising our hospital facilities so that patients requiring admission can be treated in the best possible environment.

However, inaccurate reporting and political game-playing during the past week gave rise to the notion that the Government was neglecting cystic fibrosis sufferers by not providing the facility under discussion. No decision to halt or delay it was taken by the Government at any stage. When it emerged that the project might be delayed, the Minister for Health and Children, Deputy Mary Harney, took immediate steps to ensure it would go ahead.

Although we are not where we want to be regarding the life expectancy of cystic fibrosis sufferers, there has been steady progress over the past 20 years. Matters continue to improve as new and improved treatments are developed. The Minister pointed out today that the oldest person on the register is 59 years of age and there are 35 people with cystic fibrosis who are over 40 years of age. All of us would like to see those figures increased.

In recent years, the Government provided additional revenue funding of €6.78 million to the HSE for the development of services. A further €1.6 million has been provided by the HSE in its 2009 service plan, including provision for the introduction of a screening programme for newborns. I welcome this programme.

The investment to date has facilitated the recruitment of 48 additional staff, including consultants, nursing and allied health professionals across a number of hospitals. This week the Minister announced that the St. Vincent's project will proceed on the basis that payment to the contractor will be made at the end of the construction phase of the new cystic fibrosis centre. This is a totally changed way of funding such a project with the construction company financing the development up to the final phase. The former model of payment to the builder would have involved staged payments throughout the construction period. We are constantly presented with new problems and must find innovative ways to try to move along national priority building plans such as this centre.

There has been major development in services for cystic fibrosis sufferers and the approach taken was informed by two significant reports. The first is the Pollock report, commissioned by the Cystic Fibrosis Association of Ireland, which was a review of existing hospital services for cystic fibrosis patients in the context of accepted international standards. The second report came from the HSE's working group which examined a detailed review of cystic fibrosis services across the country. It identified a range of necessary service improvements, including the need to increase the numbers of consultant, nursing and allied professional staff in cystic fibrosis units nationally.

With regard to screening, the HSE's expert advisory group on children and families has produced a well crafted document on the introduction of a cystic fibrosis screening programme. Recommendations include the establishment of a steering group to oversee the implementation of this programme and to ensure coherent development with other relevant services. The steering group will be established later this year and will oversee the roll-out of the screening programme.

As a Deputy from a Border area, I am especially interested in examining further North-South co-operation. The Cystic Fibrosis Association of Ireland has made representations to the HSE in respect of persons living in Donegal for whom attendance at the cystic fibrosis centre in Belfast might be more convenient. The HSE is pursuing this through the co-ordinating body for North-South co-operation, CAWT. At present, services for adults and children with cystic fibrosis in the north east are provided in Our Lady of Lourdes Hospital, Drogheda. A paediatric clinic is held here weekly in a dedicated space which allows for the segregation of people with cystic fibrosis based on their microbiological status. An outreach paediatric clinic was set up in Louth County Hospital in 2006.

I welcome the fact that this project is moving full steam ahead. It was always a priority for the Minister, Deputy Harney, and I share her view that it must progress with urgency. I look forward to the centre being opened as quickly as possible so that those people who suffer from cystic fibrosis may get the high quality care they deserve.

Deputy Timmy Dooley

I welcome the opportunity to contribute to this important debate. I have raised the matter on the Adjournment on at least one occasion. It is an opportune time to discuss it again.

As a number of Deputies indicated, the matter has been brought to central focus in the past number of days because of matters evolving at St. Vincent's Hospital. Although some people might be concerned about negative politicking by some politicians, nonetheless it has brought the issue of cystic fibrosis to the fore and in that sense there may be a positive outcome. As others noted, Ireland has a very high incidence of cystic fibrosis relative to our European neighbours and we must bear this in mind as we develop policies on an ongoing basis.

Two reports have been produced. The Pollock report was commissioned by the Cystic Fibrosis Association of Ireland. A great debt of gratitude is due to that organisation for its ongoing campaigning on behalf of people, particularly young people, who have cystic fibrosis. In addition, the HSE has taken a proactive approach by producing its own reports, developed through a multidisciplinary working group. The recommendations of both reports are actively pursued by the Government. The Pollock report emphasised physical infrastructure of which the project at St. Vincent's Hospital is very much part. I welcome the Minister's decision to find an imaginative way to ensure that the infrastructure is developed in the current economic climate. We must consider that methodology as a way of ensuring that other infrastructural projects, not only those concerning health care but also wider community issues, are put in place on an effective ongoing basis.

The HSE working group identified the requirement for consultants, nursing and allied professional staffing for the cystic fibrosis units nationally. It is in that context, as a Deputy from the mid-west, that I particularly wish to speak, as I have done before. In the mid-west, adult and paediatric services for people with cystic fibrosis are provided by the multidisciplinary team at Limerick General Hospital. Services there have been enhanced by additional funding of almost €700,000 which has enabled the recruitment of additional physiotherapy, dietary and social work and medical science staff. While that is all very welcome it is now necessary to proceed with the appointment of consultants. When I spoke in the House previously commitments were given and I understand they will be honoured despite the current moratorium on staffing in the public service. For that reason, the HSE needs to make the provision of a cystic fibrosis consultant to the Mid-Western Regional Hospital. It is a priority now that it has given the go-ahead for the new cystic fibrosis unit in St. Vincent's Hospital. The Cystic Fibrosis Association of Ireland in the mid west has been pushing for this measure to be taken for some time. Unfortunately that appointment has not been made. Treatment positions were advertised in February, but to date the interview panel has not been put together and therefore the process through which these roles will be filled is unfortunately moving too slowly. Based on conversations I have had with the Minister and the HSE, I understand an effort is being made to ensure that progresses without delay. It is a matter of great urgency particularly for the families in the region who have campaigned for so long. It would be right and fitting to make those appointments without delay.

The announcement on St. Vincent's Hospital has given considerable hope to all cystic fibrosis sufferers in terms of showing the Government's commitment. We now need to see that transferred to the regions, in addition to what was developed for the St. Vincent's site. The latest available data on sufferers in Ireland indicate that approximately 1,161 people with cystic fibrosis are in receipt of hospital service. They are pretty well equal between male and female, and 52% are adults and 48% are children. In 2006 and 2007 additional revenue funding of almost €7 million was provided to the HSE to develop cystic fibrosis services further. It is not enough and never will be enough for those who suffer, but it shows the Government's commitment even in these very difficult times to continue to provide that funding. In 2009 the HSE provided a further €1.6 million to support the development of cystic fibrosis services, including the screening programme for newborn children which is a very important element.

Investment has also seen the recruitment of 48 additional staff in hospitals. While this investment has facilitated the appointments that have been made, we need to progress without delay the appointment of the consultants in the mid-west region to ensure people in the mid-west and on the western seaboard are provided with the services in a manner which allows them to do their business locally.

We also need to consider a wider aspect in the delivery of cystic fibrosis services, which is providing services within the community. We all recognise that hospitals by their nature are not particularly safe places. For those who suffer from cystic fibrosis, presence in an environment where there is the potential to pick up acquired hospital bugs or anything that might affect their respiratory system must be avoided at all costs. I would encourage the HSE to continue its efforts to ensure that services are provided either at home or within the community. That is ultimately the best way to ensure that cystic fibrosis sufferers have the best chance to have the best quality of life and remain outside the hospital structure. However, when someone needs to avail of the hospital structure it is necessary that the facility exists, that it can provide the best standard of care and that the personnel with the requisite skills are also available.

I thank the Ceann Comhairle for his indulgence and I wish the Minister well in her endeavours.

Deputy Peter Kelly

I welcome the opportunity to speak on the motion. I congratulate Orla Tinsley on her great campaigning work on behalf of those with cystic fibrosis and their families. In the past year she has campaigned tirelessly on the subject and raised public awareness about cystic fibrosis. At the same time she has battled with her own illness. Cystic fibrosis affects more than 1,161 people here and Ireland has the highest proportion of sufferers in the world. Approximately one in 19 people are carriers of the cystic fibrosis gene. I was amazed to learn that 30 or 40 years ago a baby born with cystic fibrosis was likely to live for only a few months. Today with advances in research and treatment, the majority survive well into adulthood. Having said that, 25 young people died last year alone and this figure is far too high. Shared hospital facilities are deadly for cystic fibrosis patients. The risk of infection through sharing facilities can have life-threatening consequences. I am delighted the new ten-bed unit in St. Vincent's Hospital will proceed and be ready for 2011. The new unit will have single units with en suite facilities and reflects best practice in terms of infection control. I am sorry for any confusion or panic that surrounded the issue in recent weeks. However, the Minister has now given the firm commitment of a 2012 completion date.

Some work has been done to help cystic fibrosis patients in recent years. Some 19 extra staff have been recruited in St. Vincent's Hospital as part of a national initiative to improve services for cystic fibrosis patients. A total of 48 extra staff, including consultant, nursing and allied health professionals, have been appointed across the hospital system. I appreciate that this is not enough, but it is progress. I am glad that the new unit in St. Vincent's Hospital is still a priority for the Government. The new 120-bed hospital unit, incorporating 35 private rooms for cystic fibrosis sufferers, is to go to tender. The estimated cost is approximately €40 million. The tender document needs to be drawn up with details of the new payment method. This project needs to move ahead at full steam. With the HSE, the Minister, Deputy Harney, St. Vincent's Hospital and the Department of Finance working together, this unit should be open in 2011. Everybody welcomes this development. We will all give it our full support and encouragement to ensure it goes ahead. The project was always a priority for the Government. There was no decision to halt or to delay it. We now look forward to it proceeding.

At the moment 63 beds in St. Vincent's Hospital are used for respiratory cystic fibrosis services. I commend the Minister for Health and Children on doing on what is right and proper, which is proceeding with this as a matter of urgency. If at all possible we wish all cystic fibrosis sufferers a speedy recovery. We hope they all benefit from better health.

Minister of State at the Department of Health and Children (Deputy Máire Hoctor)

The Minister, Deputy Harney, described the very significant improvements made in developing the services for people with cystic fibrosis. The Government made cystic fibrosis a top priority in 2006. She detailed the particular developments which have been, and continue to be, put in place in the national adult referral centre at St. Vincent's Hospital. I am glad to have the opportunity to join the Cystic Fibrosis Association of Ireland in commending the Minister, Deputy Harney, on her resourcefulness in acting on this promptly and steering the project through in order that it will be operational as early as possible in 2011. I would now like to outline some of the additional improvements that have been made, other than at the adult centre in St. Vincent's Hospital. This investment allows patients, both adults and children, to access services closer to home with a formal shared care link with a specialist centre. Beaumont Hospital has a regional centre to provide services to adults with cystic fibrosis. In 2008 a special allocation of €2.5 million capital funding was provided to enable the hospital to develop facilities for ambulatory care for people with cystic fibrosis. The project has gone to tender and patients will also benefit from additional single room capacity in the new medical admissions unit which is due for completion in the middle of 2009. The hospital has received additional revenue investment of nearly €700,000 since 2006 for the development of cystic fibrosis services.

In the HSE region south, Cork University Hospital provides adult services to approximately 110 adult patients and paediatric services to 80 children. The HSE has agreed in principle that new facilities for adult patients with cystic fibrosis will be developed in the Cork University Hospital main campus. In the interim, plans are being advanced to provide for a day-care facility which will provide dedicated day-care space until the site development plan is fully developed. Additional revenue funding of over €1.1 million has been provided at Cork University Hospital since 2006 for the development of cystic fibrosis services.

In the west, University College Hospital, Galway, has received additional revenue funding of over €100,000 to develop services. A plan to provide interim facilities for people with cystic fibrosis in a modular building is also being progressed there with support from voluntary agencies.

In the south east, Waterford Regional Hospital treats 33 paediatric patients with cystic fibrosis. Approximately 80 young adults within the south-east catchment area attend either St. Vincent's University Hospital or Cork University Hospital. Waterford Regional Hospital has received additional funding of over €200,000 since 2006.

In the mid-west, services are provided by a multidisciplinary team at Limerick. Services have been enhanced by the additional funding of over €700,000 which has enabled the recruitment of additional specialist staff. Two consultant posts, for a consultant paediatrician with a special interest in respiratory medicine and a consultant respiratory and general physician with a special interest in cystic fibrosis, have been approved and the posts were advertised with the Public Appointments Service. It is anticipated that those interviews will take place shortly and that the successful candidates will be in their posts by the middle of this year.

In the north east, services are provided at Our Lady of Lourdes Hospital in Drogheda and an outreach paediatric clinic was also set up in Louth County Hospital in 2006.

The Cystic Fibrosis Association of Ireland has made representations to the HSE in respect of people with cystic fibrosis living in Donegal for whom attendance at the cystic fibrosis centre in Belfast might be more convenient. The HSE is pursuing this through CAIT, the coordinating body for North-South cooperation and this is a very welcome initiative.

Significant developments and improvements have been made at the hospitals in Crumlin, Tallaght and Temple Street. The significant investment of €1 million in 2006 in Our Lady's Hospital for Sick Children in Crumlin enabled the appointment of additional staff. The hospital approached the HSE last year with a proposal to develop a four-bed isolation facility for children. The hospital indicated that there was an opportunity to avail of charitable support which could be pursued. I am pleased that the project is being advanced.

Paediatric services are also provided at the National Children's Hospital in Tallaght and there are two respiratory physicians there with an interest in cystic fibrosis. Since 2006 there has been additional investment of almost €700,000 in the hospital at Tallaght. The hospital also runs an active research programme in cystic fibrosis infection including national surveillance of infection control bacteria.

Temple Street Hospital is developing a dedicated respiratory unit with a self-contained floor for the ambulant care of cystic fibrosis and respiratory patients. It is to include a new respiratory laboratory, treatment room, consulting rooms and walk-in access to the clinical nurse specialists and is due to open later this year. Additional investment of over €500,000 has been provided to the hospital since 2006.

It is clear from the investment I have described that huge progress has been made at centres across the country since the Government prioritised in 2006 the development of cystic fibrosis treatment nationally. The additional improvements which are planned will serve to further enhance the level and quality of services available to patients.

Deputy John O’Mahony

I wish to share time with Deputies Carey, Terence Flanagan, Olivia Mitchell, Ring, McEntee and Deenihan. Will the Ceann Comhairle please wield the axe when I reach six minutes?

An Ceann Comhairle

That is very generous of the Deputy. It is agreed.

Deputy John O’Mahony

There is a very enthusiastic bench here. I am delighted to speak on this motion and applaud Deputy Reilly and my party for bringing it forward.

I welcome the Minister's and Government's reversal of the decision to postpone the building of the dedicated cystic fibrosis unit at St. Vincent's Hospital. I applaud Orla Tinsley for leading a masterful campaign on behalf of cystic fibrosis sufferers in this country that brought about this reversal. No doubt this Fine Gael motion and the pressure from the House had a part to play too. Will the Minister of State confirm whether the completion of this project by 2011 is conditional on finding a developer who can wait two years for the money or are we going to find in nine months' time that there will again be a problem?

I ask because the Government's record in caring for cystic fibrosis sufferers has been appalling. Cystic fibrosis sufferers and their families have, on the one hand, had to try to look after their family members who are suffering and on the other, lead campaigns on radio and TV shows to raise awareness and keep their campaign going. The promises are made when public opinion is on a high but when it dies down the Government backtracks and the cycle must start again. I hope that this latest commitment is not another part of the cycle that has continued for many years.

Cystic fibrosis sufferers and their families are exceptional people. Many parents of CF sufferers have given up their jobs and careers to care for their children, without complaint. They seek only basic supports. In my constituency, for example, the Mayo Friends of Cystic Fibrosis are attempting to build a standalone, three-bedroom unit for the 40 or so sufferers and patients in our county. The group needs in the region of €300,000 to complete the project this year. All the money is being raised voluntarily as the agency with responsibility for health care, the HSE, will not contribute to the cost of the project. I do not need to list the examples of wastage in this country in the past ten years, ten months and I presume in the past ten weeks, that would completely pay for this project.

In some ways the care situation for CF patients in Mayo is good because of the dedication of the team under Dr. Michael O'Neill, but there is only so much that can be done when the facilities are found wanting. When an adult CF patient in Mayo needs hospitalisation he or she has to attend the paediatric ward. There is only one medical treatment room for the entire ward. That can mean waiting a long time to be seen by a doctor which increases the chances of exposure to an infection. There is no outpatient facility apart from the CF clinics which are held three times a year.

Most patients are treated under a dual care system with a Dublin hospital. That means visits to Dublin and because of the many horror stories associated with such trips, patients are, naturally enough, reluctant to travel. One patient was admitted to Beaumont Hospital last year for vital treatment but on arrival in Dublin there was no bed for him and he was given a bed in a nursing home. He was exposed to potentially lethal infections and did not have the treatment that he was supposed to have.

CF care in Ireland, despite the best efforts of the professionals and the families, is light years behind what it should be. It is underfunded and underresourced. It is as if, because of its being a life limiting condition, the authorities do not really believe that they should be investing in it for the long term. It is an appalling indictment of a system that is supposed to care. If this is caring then I would hate to see what non-caring is.

I have given some of these facts relating to my own county to help people understand that although Ireland has the biggest incidence of cystic fibrosis in the world, sufferers here die on average ten years earlier than their counterparts in Britain or the US.

I ask for support for this motion so that cystic fibrosis sufferers will finally get the medical care they deserve.

Deputy Joe Carey

Ireland has the largest incidence of cystic fibrosis in the world. Despite this fact, patients in Ireland have a ten year lower life expectancy than their counterparts in Northern Ireland. It is a damning indictment of the Government and the Minister for Health and Children that this should be allowed to happen. Cystic fibrosis sufferers have been ignored. Their life-threatening condition has been swept under the carpet for far too long. People living with cystic fibrosis have the ability to live full, active productive lives with normal life expectancies, provided the correct facilities and treatments are in place in our hospitals.

It is four years since the publication of the Pollock report and ten days ago the Minister made another attempt to long-finger the capital development works proposed for St. Vincent's Hospital. The provision of the promised 120-bed facility with 30en suite rooms at St. Vincent’s Hospital is essential if this State is to adequately provide for cystic fibrosis sufferers. In the last year alone, 25 cystic fibrosis sufferers have died. For this reason the Minister must deliver on the political commitments she gave this House and the people of Ireland on the development of St. Vincent’s Hospital.

I want to draw attention to the plight of cystic fibrosis living in the mid-west, where sanction has been granted for two consultant positions based in Limerick Regional Hospital. These positions will serve both adults and children suffering from cystic fibrosis. For the first time the region will have respiratory consultants with specific skills in the treatment of cystic fibrosis. These positions have been advertised and applications have been received, but this process has been ongoing since the original commitment was made two years ago. I ask the Minister, Deputy Harney, to intervene with the Public Appointments Service, where this matter rests, and urge it to immediately move to interview stage and make these vital appointments as soon as possible. The exact same position applies for the specialist nursing staff required. Again, I insist that no barriers be placed in front of this process. Advertising has commenced and applications have been received.

The other element of service provision in the mid-west is not as advanced. I speak of the position of physiotherapists for adult sufferers of cystic fibrosis. It is incomprehensible that there is not a cystic fibrosis physiotherapist in place for adult patients in Limerick. I asked the Minister to expedite this process with the national employment monitoring unit of the HSE allowing the position to be advertised. The Minister has identified the development of cystic fibrosis services as a policy priority of the HSE since 2006. What has happened here over the last number of weeks is disgraceful. How many times do cystic fibrosis sufferers have to use the media for the Minister and her Government to take the matter seriously and deliver on their commitments without trying to weasel their way out of them at a later stage?

A shameful pattern is developing with the cervical cancer vaccine and cystic fibrosis. The Minister and the HSE show an amazing ability to concentrate on reneging on promises on health care delivery while sailing on regardless with more and more bureaucracy in clinical directorships, reviews of service provision and reinventing the HSE wheel on a more regional basis. I ask the Minister to deliver on time for cystic fibrosis.

Deputy Terence Flanagan

I thank Deputy Reilly for bringing this motion before the House and commend him on all his campaigning work for cystic fibrosis sufferers. I fully support this motion, which calls on the Minister for Health and Children to ensure the much needed and life saving cystic fibrosis unit at St. Vincent's Hospital is brought on-line immediately.

This Government gave a public commitment in 2008 that it would build 34 single, en suite rooms for cystic fibrosis patients. Last week the Government stated it will not provide these beds until 2011 at the earliest. This is devastating news for all cystic fibrosis sufferers, as only eight en suite rooms are available to cystic fibrosis patients. It was promised that this unit would be delivered by 2010 and now it has been put back until 2011. There has been no tendering for the project and we are not sure whether it will happen by 2011.

Last week, the Cystic Fibrosis Association was forced to take renewed action in a bid to get the promised services its members require to survive. It launched the campaign, Irish War Crimes, which is fighting against political neglect of their illness. I commend Ms Orla Tinsley who launched this campaign and has urged this Government to deliver on its promise to provide this much-needed unit. Approximately one in 19 people in Ireland are carriers of the cystic fibrosis gene and where two carriers parent a child together, there is a one in four chance of the baby being born with cystic fibrosis. As already stated, Ireland has the highest incidence of cystic fibrosis in the world, with 1,135 sufferers. Life expectancy is much lower in the Republic than in Northern Ireland, and the Government must tackle this.

Because of a lack of neonatal screening, home care and supports for sufferers and families and isolation beds for suffers from the disease, it is more difficult for somebody who suffers from cystic fibrosis to lead a normal life. We were promised a neonatal screening process for cystic fibrosis patients, but just as the Government's failed to deliver the beds at St. Vincent's, it has failed to deliver a roll-out of this national neonatal service for cystic fibrosis patients. This could be changed overnight if the political will existed to deliver proper cystic fibrosis services.

I raised an issue in the Dáil on a number of occasions, once with Deputy Reilly and once on the Adjournment. The issue involves a parent who has two young daughters, one aged two and a half and one aged ten months. These children were using the high-frequency compression vests which the HSE was providing, however, sadly, this support is no longer being provided. These vests cost only €13,500 each, including VAT. They made a major difference to this family. Where only one parent was available to provide the physiotherapy to one child at a time it took much longer and the children did not like being moved around for physiotherapy. The vests greatly improved the quality of life for the children. This must be re-examined by this Government considering the amount of money that is being squandered.

Deputy Olivia Mitchell

I welcome the opportunity to speak on this motion for obvious reasons, but also because it typifies the lack of coherence and planning that goes into so many of our health services. One would think that where we have a predisposition to a disease we would have developed some expertise in the management and treatment of it. As a nation we have a genetic predisposition to cystic fibrosis and this has been known for years. It comes as no surprise to those who plan our health service. One would have thought against that background that a thinking Government and forward-planning health service would have built a world-class service for sufferers, that we would have become a repository for research-based knowledge in the management and treatment of the illness, that we would have become the experts, have had services second to none and have been the model for the rest of the world, which would come to us to see how to treat cystic fibrosis. However, our services cannot even provide sufferers with a clean bedroom. With such a high incidence of the disease, by now we should have developed services that would give the best possible outcomes to sufferers. They should have a high life expectancy, instead people with cystic fibrosis here die younger than do sufferers from the disease in most other European countries. The rate in that respect is certainly higher here than it is in our near neighbour, which does not have anything like the incidence of the disease Ireland has.

Some of my colleagues have said that people with cystic fibrosis are extremely prone to infection. We are all prone to infection. Infection is not good for any of us, but we can fight it. However, for these sufferers, it can be fatal. The health service exposes them to infection not when they are well but when they are sickest, when they have to go to an accident and emergency department when their health is already compromised. It is no wonder they are out campaigning on the streets despite the level of their illnesses. When they are transferred from an accident and emergency department to a hospital bed, they do not even have a room or toilet to themselves. The toilets in some of our hospitals, even if they were used by people who were not sick, are no joy to behold. I have visited the toilets in St. Vincent's Hospital and I have received endless complaints about them. I have not seen the toilet facilities in the new buildings and cannot speak about them but in the older part of the hospital, they are not facilities one would like to be sharing with anybody.

My first exposure to cystic fibrosis was in the general election campaign in 1997 when a neighbour's son, who was the same age as my son, died tragically waiting for a heart-lung transplant. As a result of the campaign at that time the heart-lung transplant unit was built in the Mater Hospital. I mention this because it is another example of the absence of any kind of coherent planning to develop the full range of services required. Some of my colleagues have said that only one cystic fibrosis patient has had a transplant operation since the unit was built. That was the medical advice at the time but nevertheless it went ahead. To start with the provision of a Rolls Royce unit, the heart-lung transplant unit, when the very basic facilities are not provided, when there is not even a clean bedroom for such patients, is a nonsense. At best, it is bad planning and, at worse, it is criminal.

This is another example of the Government's ad hoc approach, with the provision of these services being on and then off. The services for such patients throughout the country are deficient or are being provided by means of fundraising. Various Government backbenchers have said such provision has been a priority for Government since 2006. If it has, what happened in terms of the recommendations in the Pollock report produced in 2005? The lack of planning continues.

I would be extremely sceptical about giving a builder or developer in the private sector the responsibility of carrying the cost of building the proposed unit until it is completed in two or three years' time. It is not realistic. Most builders cannot carry the cost of their wage bill until this weekend, never mind for two years.

Deputy Michael Ring

I am delighted to make a brief contribution to this debate. I compliment my colleague, Deputy James Reilly, who has been passionate in highlighting this issue; he has certainly put it on the agenda. People were very disappointed again last week when they thought that work on this unit would not go ahead. Some 40 people suffer from cystic fibrosis in County Mayo. The families concerned find it difficult to source services in rural areas. I attended a public meeting on this issue last year at which I heard how the people with cystic fibrosis and their families are affected by the disease and how the sufferers cannot afford to contract an infection. Commitments were given by the Government to provide for them. The Minister, Deputy Harney, gave such a commitment again this week. I am glad Deputy Reilly continued the debate on this issue today because it is our duty and job to make sure that this proposed unit and the necessary services and facilities are put in place. If we do not make money available to provide for such people, then we have no society. Having regard to the recommendations in the report on this issue, these people have been waiting for these services for many years. It would be wrong to disappoint the most vulnerable people, those who are sick and who need the services most.

A great deal of money is being wasted by the Government on myriad schemes. The money that is being wasted on e-voting machines could be allocated to fund services for these people. Other wastage has been highlighted on a regular basis. The Committee on Public Accounts examines matters in Departments on a weekly basis. It is wrong that people should have to beg for the provision of services and have to give interviews on radio stations to seek vital national services. It is wrong that people are worried about their health and are afraid they will not get the service they need when they need it most.

The Minister for Health and Children talks a good game and she has done so for a long time. It is important to ensure that services are up and running as soon as possible. I thought that the building of the proposed unit would be almost complete and close to being in operation now, but instead we hear that we have to wait for people to be appointed. That is not right and is not good enough. It is not fair to the 40 sufferers in County Mayo whom I represent or to sufferers nationally who are depending on these services. Cystic fibrosis is a cross in itself that has to be carried by the sufferers; they should not have to worry about getting the services they badly need.

I hope the Minister for Health and Children will make this political promise a priority and ensure it is delivered on. If not, my colleague, Deputy James Reilly, will table a further motion before the end of this year. If we do not see progress on such provision from the Department of Health and Children and from the Minister, we will keep highlighting this issue. My colleagues and I will put pressure on the Government to deliver. People should not have to be depending on Ministers for this; the necessary services, on which people rely, should be in place. It is wrong that this issue is the subject of another motion in the Dáil. It is wrong that people had to highlight this issue again on the radio this week. They thought that it had been dealt with, but that was not the case. I hope we do not have to table another motion in the Dáil on this matter and that what has been promised and committed will be delivered on.

Deputy Shane McEntee

I am thankful for the opportunity to speak on the motion on this subject, the impact of which is probably felt in every parish in the country. When it was publicly highlighted two years ago that we were lagging behind in terms of the provision of necessary facilities, we thought then that the proposed unit would certainly be built at this stage. I congratulate our spokesperson on bringing forward this motion. I was delighted to hear the Minister give a guarantee this morning that this unit will be built. I am not too worried, nor I am sure are the people with cystic fibrosis, about how it will be paid for as long as it is built.

I urge the Minister to stick to her word. No conflicts should arise about the building of this fantastic facility to which these young people are entitled. When it is built these people will be able to attend the unit and have no fear of contracting infection. By 2011, hopefully, people suffering with cystic fibrosis can look forward to normal life expectancy.

I would like to highlight another issue, that of donor cards, which is related to this issue. The organs of a donor card carrier who unfortunately dies in an accident could, if suitable, prolong the life of a person with cystic fibrosis. I will give an example of such an instance. A young girl, Kiara Duncan, who worked in the shop next door to me in Duleek went to Australia on 7 September 2007 and was involved in a car accident as a result of which she ended up in a coma. Her mother flew out to see her and discovered that Kiara, who was 20 years old, was carrying a donor card. She had carried the card from when she was 18 years of age. Her mother and family made a decision to donate her organs. Today Kiara lies in a grave in Kentstown but a 30 year old man with cystic fibrosis in Australia sends the family a letter every few months and updates them on his progress. Before the unit is opened perhaps the Minister would consider a campaign to urge young people, in particular, to carry donor cards. In the event of a fatal accident, there is an opportunity for a person with cystic fibrosis to receive an organ donation. We have a poor record in terms of the donation of organs for transplant. It is crucial that an organ donor card campaign be run in conjunction with the provision of these services. There is not a parish in Ireland in which there is not a person suffering from cystic fibrosis. I know a family outside Slane in which two of the daughters were sufferers. Both the father and mother made enormous efforts to try to extend their lives beyond the age of 19 or 20, but sadly both girls died. I welcome the Minister's decision to go ahead with this. I sincerely hope there are no hiccups as regards contracts with the builder. I do not know who the builder is, but one way or another this unit has to be built. If there is a new Government in office before then, we will ensure that it is finished.

Deputy Jimmy Deenihan

I thank Deputy Reilly for providing us with the opportunity to speak on cystic fibrosis this afternoon. An independent review of cystic fibrosis services in Ireland carried out by Dr. Ron Pollock was published on 7 February 2005. It showed that the majority of adults with cystic fibrosis were being treated in inadequate and dangerous facilities. Little has changed since that publication, despite the availability of resources.

Following the publication of the Pollock report, the HSE established a working group in May 2005 to undertake a detailed review of CF services. Although the group accepted the recommendations of the Pollock report and finished its work in August 2006, the HSE has still not published its findings. It is very important that the Minister indicate today when they will be published. The reason for non-publication, I believe, is that the Government does not want to put the recommendations in place.

As previous speakers have said, the Republic of Ireland has the highest incidence of CF in the world. While the severity varies from person to person, the average severity of CF in this State is greater than that in other areas such as Northern Ireland, the United States and Canada. Therefore the need for resources to treat cystic fibrosis patients is greater here. There is an ongoing need for inpatient care and designated inpatient service beds for adults and children with cystic fibrosis in keeping with international standards because they are uniquely prone to particular infections. Inpatients with CF should be treated in single en suite rooms.

I want to refer, in particular, to services in Cork University Hospital because they affect my constituency in Kerry. There are some 44 patients in Kerry and I recall a number of Deputies raising the issue of Billy Burke from Killorglin, some years ago, who has since died. There is a group in Kerry, Build 4 Life, whose chairman is Mr. Joe Browne, which has collected €1.5 million for the centre in Cork. For the Minister of State's benefit, the CUH is the second largest centre in the country. It treats about 200 patients as against St. Vincent's 300. It is very important that facilities be provided in CUH as soon as possible. The money that is available could provide a day unit, which the Minister mentioned here today, and also a protective unit of eight to 11 beds. There is a proposal for Dublin. There are builders who could construct both the day unit and the protective unit for this money if given the opportunity. That is all I am saying. It is very important that in Cork the money is ring-fenced for both of these units.

As the moment in Cork patients have to share the same room, or sometimes an adjacent room in the accident and emergency unit with patients suffering from other ailments. As previous speakers have pointed out the threat of cross-contamination and cross-infection must be considered. CF patients cannot be exposed to the risk of infection from patients with other ailments because of their daily struggle just to stay alive. It is crucial therefore that the possible consequences of mixing patients should be taken into consideration.

CUH has a very efficient cystic fibrosis team and the services are to a very high standard. The necessary staff are available and this means no extra staff complement is required. For patients from Kerry, Cork, Waterford and Tipperary, it is very important that they can be treated relatively close to home so that they do not have to make the long arduous trip to Dublin at all times. It is great that we are discussing this here today, but it is very important that this debate lead to some real action and that there are no further delays at either St. Vincent's or CUH — especially when the finance is in place and the will exists to provide this facility if the HSE will allow it.

Minister of State at the Department of Health and Children (Deputy John Moloney)

I, too, welcome the opportunity to say a few words in this debate while recognising the importance of the Private Members' motion before the House.

I thank Deputies for their contributions and would like to respond to a number of the points made. At the outset, I should like to confirm the commitment, not just of the Government but in particular of the Minister, Deputy Mary Harney. Over several months, the Minister has shown a particular commitment on this matter and clearly substantial progress has been made since 2006 in developing services in this area.

I recall when I was Chairman of the Joint Committee on Health and Children, many presentations were made to it as regards investment and development in the level of cystic fibrosis services. I know health, progress and money cannot be mentioned in the same sentence, but at the same time when we are being criticised for lack of interest it is worth putting on the record that in 2006-07 additional revenue funding of €6.78 million was provided to develop cystic fibrosis services. In 2009 a further €1.6 million was provided and I refer to those particular figures lest people develop the impression that the Government is not committed, by way of the deferral. That does not take away for a minute from the very serious commitment made by this Minister.

I will make one small political point, having listened to people opposite, particularly Deputy Reilly who tried to reduce the Minister's word. Regardless of what a speaker's political persuasion is, he or she should know that the Minister, Deputy Mary Harney has always had integrity, honesty and decency. That is known throughout this country and it is important to restate it.

Deputy James Reilly

What about the children who want their cervical vaccination?

Deputy John Moloney

I know the Deputy loves to find an issue he can use to promote his name. I have watched that for the past year or two. However, I can say that——

Deputy Jimmy Deenihan

That is not very fair.

Deputy John Moloney

I am staying with that remark and in years to come the Minister will be recognised for her honesty and integrity.

Deputy James Reilly

In the years to come Deputy Moloney will be remembered as the Minister of State who failed national health.

Deputy Jimmy Deenihan

Deputy Reilly has made more of a contribution than anyone in this House.

Deputy James Reilly

The integrity of Deputy Harney in promising a vaccine for children in August and reneging on it in November leaves a great deal to be desired. If that is Fianna Fáil's idea of integrity, the Minister of State can keep it.

An Ceann Comhairle

The Minister of State, without interruption. He only has five minutes, so let us hear from him.

Deputy John Moloney

For a man who made serious commitments as chairperson of the IMO and then changed his mind in an interview with the Sunday Business Post, I doubt very much if you can speak about integrity.

Deputy James Reilly

What commitments did I make?

An Ceann Comhairle

All comments must be directed through the Chair.

Deputy John Moloney

In the few minutes I have left, perhaps I can refer to some of the points that were raised. I want to clarify a point raised by Deputy Charles Flanagan, who referred to the provision of special vests for CF patients at a cost of €13,000. It is important to point out in this debate that the decision not to provide the vests was based on a review by an expert group. It had nothing to do with costings or funding. That multi disciplinary expert group found there was insufficient evidence to support the provision of the vests and the position will be revisited if the evidence changes. Rather than have people of the view that it was purely a case of the Government trying to reduce overheads, the facts are far different, as the figures from 2006 can confirm, and given the commitment for 2011. I believe that as I am sure many other people do.

I thank Deputy Upton for the issue she raised and wish to respond on the national lung transplant unit at the Mater hospital. The Minister, Deputy Harney, described earlier the specific challenges in finding suitable donors for CF patients and the strict, and indeed stringent, clinical criteria regarding the acceptability of organs. We need to increase the number of organ donations and this is being addressed in a number of ways. I am glad to have the opportunity to mention the recent launch of the 2009 organ awareness campaign involving public consultation on how best to deal with the issues of consent for organ transplantation — to be dealt with in the forthcoming human tissue Bill. Plans are being finalised by the HSE to proactively increase donations through hospitals and intensive care units.

We listened to the presentations made to the Committee on Health and Children on cystic fibrosis and additional funding of nearly €7 million has been invested to date in the development of services, resulting in nearly 50 additional staff, including consultants, nurses and allied health professionals. A further €1.6 million is being provided this year to support those services. In addition to significant revenue investments, a programme of infrastructural support has been completed. A cystic fibrosis register which has been established with State funding will allow us to make meaningful international comparisons. I believe in the Minister's ability to deliver and the commitments she has made remain solid and sincere.

Deputy Tom Hayes

I wish to share my time with Deputies Finian McGrath and Pat Breen.

An Ceann Comhairle

Is that agreed? Agreed.

Deputy Tom Hayes

I commend Deputy Reilly on allowing us the opportunity to contribute to this important debate. A lot has been done in regard to cystic fibrosis since the Cystic Fibrosis Association of Ireland began lobbying public representatives. Parliamentary questions were asked on the issue and it was discussed on the floor of this House. However, while some of those concerned have seen improvements in their quality of life, certain issues remain to be addressed.

Proposals have been made on increasing awareness of donor cards. People's lives can be greatly improved through organ donation. The Minister should put her stamp of approval on these proposals. Previous speakers have told the stories of individuals who have benefitted by receiving an organ transplant.

Medical card applications require people to undergo a slow and complex process. Those with cystic fibrosis should have the automatic right to medical cards because the disease is well known. Universal screening has been deferred since 2005 despite assurances from the Minister that it would be introduced. Much more needs to be done in the area of early detection.

Waterford hospital lacks a cystic fibrosis unit even though it currently treats 80 patients. I have been in regular contact with the Minister on this issue. While a nurse has been recruited to deal with cystic fibrosis patients in Waterford, more investment is needed in providing beds. The south east region includes Wexford, Waterford, South Tipperary, Carlow and Kilkenny.

I acknowledge that the issues pertaining to St. Vincent's hospital have been addressed in recent days but I am not completely sure what the outcome will be of the search for a builder.

Deputy Finian McGrath

I support the specific call in the motion for a 34 bed unit for cystic fibrosis patients at St. Vincent's hospital. I welcome the decision made by the Minister on this unit but I am concerned about the lack of a commitment to a 34 bed unit and day care centre for cystic fibrosis patients. In my discussions with two Taoisigh and various Ministers, we all agreed on the need for such a unit. Late last night, I tried again to have a commitment to a 34 bed unit included in the Government amendment to the motion and in the Minister's speech but, sadly, this did not happen. I feel betrayed that the Government did not include the phrase "34 bed unit" in its amendment.

My duty is to support the 1,161 cystic fibrosis patients in this country. It is unacceptable that patients have to appear on talk shows to demand their rights as citizens. I commend the staff at St. Vincent's hospital, and Charlie Gallagher in particular, on the great work they are doing. I also commend Gerard McElvaney and his team at Beaumont hospital on their dedication and hard work. It is up to us as legislators to support these professionals and the cystic fibrosis families. It is urgent that we do so in view of the 25 people who died from the disease last year.

It is unacceptable that cystic fibrosis patients are at risk of cross-infections in our hospitals. This is the main reason 34 en suite rooms and a dedicated day centre are needed. I am concerned that elements in the HSE are telling the Minister what she should do. This policy has to be led by the Minister and it is up to the Government to fund and direct the HSE accordingly.

Two years ago, I was promised a designated national centre for cystic fibrosis at St. Vincent's hospital. Approximately 300 patients use this service, 10% of whom are in the hospital at any given time.

I commend the Cystic Fibrosis Association of Ireland on its hard work and urge the Government to heed the views of parents, doctors and patients. This motion is about building a quality health service for all cystic fibrosis patients.

Deputy Pat Breen

The Government was embarrassed into a U-turn on the provision of isolation facilities at St. Vincent's Hospital because of the courage of the cystic fibrosis patients and their families who were forced to take to the airwaves to make their cases heard. These people have enough to worry about without this Government adding to their woes. They have been forced to endure a week of unnecessary stress and anxiety.

I give a guarded welcome to the renewed commitment that the unit at St. Vincent's will be in operation as early as possible in 2011. Cystic fibrosis patients have been disappointed previously but I hope the Minister will deliver on this occasion. Approximately 1,100 people in Ireland suffer from cystic fibrosis. Those who attend the unit at St. Vincent's Hospital include patients from my constituency of Clare. When they present at hospitals they must contend with the fear that they will die through exposure to infections. I know of one 25 year old man from Ennis who attends St. Vincent's but cannot present at accident and emergency departments when he requires medical attention because he is afraid he will die by doing so. Cystic fibrosis sufferers have to wage daily battles for basic services to stay alive. Cystic fibrosis patients born in the Republic of Ireland have a shorter life expectancy than those born just over the Border, but this should not be the case.

It is not just at St. Vincent's Hospital that cystic fibrosis patients and their families have to battle against the system. Approximately 30 patients from County Clare attend the unit at the Mid-West Regional Hospital in Limerick. In 2006, additional funding of €6.78 million was allocated to the HSE to develop services for cystic fibrosis patients in Limerick. Three years later, cystic fibrosis patients in Limerick are still without an adult cystic fibrosis consultant. The cystic fibrosis association in Clare has worked hard and thanks to its efforts there is some movement at last. The consultant positions and the positions of two cystic fibrosis nurses have finally been advertised.

When I raised this matter in the House on the Adjournment debate of 9 July 2008, the Minister of State, Deputy Mary Wallace, told me the HSE was considering the consultant posts, and added that it was in the process of recruiting for the remaining posts. However, it has taken seven months for those positions to be advertised. Interested candidates have applied for the consultant positions but unfortunately an interview panel has not been approved. In March, the two cystic fibrosis nurse positions were finally advertised, but Clare cystic fibrosis patients are worried that the recent moratorium on recruitment in the public service could affect recruitment to these positions.

In reply to a parliamentary question last week, the Minister for Health and Children, Deputy Harney, reassured me that the "moratorium does not apply to consultants and therapists". I welcome this decision. If the Minister is really serious about improving facilities for cystic fibrosis patients, she should contact the HSE and ensure that these vacancies are filled as soon as possible.

The mother of a cystic fibrosis patient told me recently that, "The longer our patients in Limerick are without an adult CF consultant, the more their overall health is at risk and they are in danger of having their life-span shortened. For them, sometimes even to live life is an act of courage". Cystic fibrosis patients in Ireland will continue to die unnecessarily young as a result of the basic facilities they require not being available here. Even at a time of recession we must ensure that the weakest and most vulnerable are nurtured and cared for.

Deputy James Reilly

I wish to address an issue raised by Deputy Tom Hayes. Many people with cystic fibrosis are entitled to a medical card. The recent decision by the Government and the HSE to centralise applications for medical cards is causing chaos. It is to be centralised in Finglas but I am informed that some of it may even be outsourced. There is certainly not the expertise that exists in local areas for patients, and there is certainly no local knowledge. I have a letter from my local health office expressing grave concern that priority is not being given to people with terminal illnesses, including cancer. This issue needs to be addressed by the Minister at a later stage and I will table a parliamentary question on it.

The Minister of State, Deputy Moloney, referred to the integrity of the Minister for Health and Children. I wish to examine that assertion. Does integrity mean misleading the Dáil when she told me that GPs had agreed a protocol for referral for cancer patients, when they had not? That tells its own story. Does integrity mean promising Orla Tinsley that she would have a CF unit by the end of 2010? In response to a question from Deputy Shatter, the Minister clearly said that it would be available in 2010, and that nobody was saying otherwise. Is integrity defined by promising a cervical vaccine to children to protect them against cancer, and then reneging on that three months later? If that is the Minister of State's definition of integrity, I will repeat what I said to him during his few minutes' speech. It is the sort of integrity that he is welcome to, and on which his Government has expounded quite a bit.

Deputy John Moloney

Will I compare it with Deputy Reilly's integrity?

An Ceann Comhairle

I will deal with this.

Deputy James Reilly

These are facts.

An Ceann Comhairle

I am sorry Deputy Reilly.

Deputy James Reilly

It is a fact that the vaccine was promised and reneged on.

An Ceann Comhairle

Let me speak now. Convoluted or indirect references to the Minister for Health and Children misleading the Dáil are not in order and must be withdrawn. I have to insist on it.

Deputy James Reilly

Is the Ceann Comhairle saying to me——

An Ceann Comhairle

The Deputy is not entitled to make convoluted or indirect references to the Minister for Health and Children misleading the Dáil. That is not in order under standing orders.

Deputy James Reilly

It is my view that she did.

An Ceann Comhairle

It is not in order and I must make the ruling. The reference must be withdrawn.

Deputy James Reilly

I will only withdraw that on the basis that I will come back to the Ceann Comhairle with the evidence of that. I will go through whatever the protocols are.

An Ceann Comhairle

I am calling on Deputy Reilly to proceed. I have to be fair to every Member.

Deputy James Reilly

The Minister was not terribly fair to Deputy Shatter, given the manner in which she attacked him on an entirely unrelated matter. He laid out, as only a lawyer can do, a clear demonstration of how she broke her word. I put it to the Minister of State, Deputy Moloney, that he has learned well from his mistress — shoot the messenger and do not deal with the issue.

Deputy John Moloney

The Deputy is claiming the high ground.

Deputy James Reilly

The motion before the House is very simple. It needs no amendment, unless a fudge is intended. I will read part of it into the record. It calls on the Minister for Health and Children and the Government to:

Instruct the HSE to commence immediately the development of the urgently needed and life saving cystic fibrosis unit at St. Vincent's Hospital and thus provide 34 inpatient single en suite beds as part of a 120-bed development at St. Vincent’s Hospital so that these facilities will be available in 2011.

It could not be clearer or simpler, so why do we need an amendment to it? Why is the period of nine months built into the amendment? That must surely raise concerns that have already been expressed by the Cystic Fibrosis Association of Ireland.

The Minister said earlier that she would not take lectures from anyone. Reading between the lines, however, it is easy to say that she will not listen to anyone. I hope she will listen today and will keep her word on this occasion. I also hope we will not see Orla Tinsley and many of her friends and distraught parents outside Leinster House in nine months' time with another 25 young people with cystic fibrosis having lost their chance of life. That is how many died in the past year.

Cystic fibrosis sufferers die up to ten years younger in this country. Let there be no more needless deaths. Let us give them the same fighting chance as their cousins north of the Border. I commend the motion to the House.

Amendment put.

The Dáil divided: Tá, 73; Níl, 61.

Tá

• Ahern, Dermot.
• Ahern, Noel.
• Andrews, Barry.
• Andrews, Chris.
• Ardagh, Seán.
• Aylward, Bobby.
• Blaney, Niall.
• Brady, Áine.
• Brady, Cyprian.
• Brady, Johnny.
• Browne, John.
• Byrne, Thomas.
• Calleary, Dara.
• Carey, Pat.
• Conlon, Margaret.
• Connick, Seán.
• Cregan, John.
• Cuffe, Ciarán.
• Cullen, Martin.
• Curran, John.
• Dooley, Timmy.
• Fahey, Frank.
• Finneran, Michael.
• Fitzpatrick, Michael.
• Fleming, Seán.
• Flynn, Beverley.
• Gogarty, Paul.
• Gormley, John.
• Grealish, Noel.
• Hanafin, Mary.
• Harney, Mary.
• Haughey, Seán.
• Hoctor, Máire.
• Kelly, Peter.
• Kenneally, Brendan.
• Kennedy, Michael.
• Kirk, Seamus.
• Kitt, Michael P.
• Kitt, Tom.
• Lenihan, Brian.
• Lenihan, Conor.
• Lowry, Michael.
• McEllistrim, Thomas.
• McGrath, Mattie.
• McGrath, Michael.
• McGuinness, John.
• Mansergh, Martin.
• Martin, Micheál.
• Moloney, John.
• Moynihan, Michael.
• Mulcahy, Michael.
• Nolan, M. J.
• Ó Cuív, Éamon.
• Ó Fearghaíl, Seán.
• O’Brien, Darragh.
• O’Connor, Charlie.
• O’Dea, Willie.
• O’Flynn, Noel.
• O’Hanlon, Rory.
• O’Keeffe, Batt.
• O’Keeffe, Edward.
• O’Rourke, Mary.
• O’Sullivan, Christy.
• Power, Peter.
• Power, Seán.
• Ryan, Eamon.
• Sargent, Trevor.
• Scanlon, Eamon.
• Smith, Brendan.
• Treacy, Noel.
• Wallace, Mary.
• White, Mary Alexandra.
• Woods, Michael.

Níl

• Allen, Bernard.
• Bannon, James.
• Barrett, Seán.
• Behan, Joe.
• Breen, Pat.
• Broughan, Thomas P.
• Bruton, Richard.
• Burke, Ulick.
• Burton, Joan.
• Byrne, Catherine.
• Carey, Joe.
• Coonan, Noel J.
• Costello, Joe.
• Coveney, Simon.
• Crawford, Seymour.
• Creighton, Lucinda.
• D’Arcy, Michael.
• Deasy, John.
• Deenihan, Jimmy.
• Doyle, Andrew.
• Durkan, Bernard J.
• Feighan, Frank.
• Ferris, Martin.
• Flanagan, Charles.
• Flanagan, Terence.
• Hayes, Brian.
• Hayes, Tom.
• Higgins, Michael D.
• Hogan, Phil.
• Howlin, Brendan.
• Kehoe, Paul.
• Lynch, Ciarán.
• McCormack, Pádraic.
• McEntee, Shane.
• McGrath, Finian.
• McManus, Liz.
• Mitchell, Olivia.
• Morgan, Arthur.
• Naughten, Denis.
• Neville, Dan.
• Noonan, Michael.
• Ó Caoláin, Caoimhghín.
• Ó Snodaigh, Aengus.
• O’Donnell, Kieran.
• O’Dowd, Fergus.
• O’Mahony, John.
• O’Shea, Brian.
• O’Sullivan, Jan.
• Perry, John.
• Quinn, Ruairí.
• Rabbitte, Pat.
• Reilly, James.
• Ring, Michael.
• Shatter, Alan.
• Sheahan, Tom.
• Sherlock, Seán.
• Shortall, Róisín.
• Stagg, Emmet.
• Timmins, Billy.
• Tuffy, Joanna.
• Upton, Mary.

Tellers: Tá, Deputies Pat Carey and John Cregan; Níl, Deputies Paul Kehoe and Emmet Stagg.

Amendment declared carried.

Question put: "That the motion, as amended, be agreed to."

The Dáil divided: Tá, 70; Níl, 61.

Tá

• Ahern, Dermot.
• Ahern, Noel.
• Andrews, Barry.
• Ardagh, Seán.
• Aylward, Bobby.
• Blaney, Niall.
• Brady, Áine.
• Brady, Cyprian.
• Brady, Johnny.
• Browne, John.
• Byrne, Thomas.
• Calleary, Dara.
• Carey, Pat.
• Conlon, Margaret.
• Connick, Seán.
• Cregan, John.
• Cuffe, Ciarán.
• Cullen, Martin.
• Curran, John.
• Dooley, Timmy.
• Fahey, Frank.
• Finneran, Michael.
• Fitzpatrick, Michael.
• Fleming, Seán.
• Flynn, Beverley.
• Gogarty, Paul.
• Gormley, John.
• Grealish, Noel.
• Hanafin, Mary.
• Harney, Mary.
• Haughey, Seán.
• Hoctor, Máire.
• Kelly, Peter.
• Kenneally, Brendan.
• Kennedy, Michael.
• Kirk, Seamus.
• Kitt, Michael P.
• Kitt, Tom.
• Lenihan, Conor.
• Lowry, Michael.
• McEllistrim, Thomas.
• McGrath, Mattie.
• McGrath, Michael.
• McGuinness, John.
• Mansergh, Martin.
• Martin, Micheál.
• Moloney, John.
• Moynihan, Michael.
• Mulcahy, Michael.
• Nolan, M.J.
• Ó Cuív, Éamon.
• Ó Fearghaíl, Seán.
• O’Brien, Darragh.
• O’Connor, Charlie.
• O’Dea, Willie.
• O’Flynn, Noel.
• O’Hanlon, Rory.
• O’Keeffe, Batt.
• O’Keeffe, Edward.
• O’Rourke, Mary.
• O’Sullivan, Christy.
• Power, Seán.
• Ryan, Eamon.
• Sargent, Trevor.
• Scanlon, Eamon.
• Smith, Brendan.
• Treacy, Noel.
• Wallace, Mary.
• White, Mary Alexandra.
• Woods, Michael.

Níl

• Allen, Bernard.
• Bannon, James.
• Barrett, Seán.
• Behan, Joe.
• Breen, Pat.
• Broughan, Thomas P.
• Bruton, Richard.
• Burke, Ulick.
• Burton, Joan.
• Byrne, Catherine.
• Carey, Joe.
• Coonan, Noel J.
• Costello, Joe.
• Coveney, Simon.
• Crawford, Seymour.
• Creighton, Lucinda.
• D’Arcy, Michael.
• Deasy, John.
• Deenihan, Jimmy.
• Doyle, Andrew.
• Durkan, Bernard J.
• Feighan, Frank.
• Ferris, Martin.
• Flanagan, Charles.
• Flanagan, Terence.
• Hayes, Brian.
• Hayes, Tom.
• Higgins, Michael D.
• Hogan, Phil.
• Howlin, Brendan.
• Kehoe, Paul.
• Lynch, Ciarán.
• McCormack, Pádraic.
• McEntee, Shane.
• McGrath, Finian.
• McManus, Liz.
• Mitchell, Olivia.
• Morgan, Arthur.
• Naughten, Denis.
• Neville, Dan.
• Noonan, Michael.
• Ó Caoláin, Caoimhghín.
• Ó Snodaigh, Aengus.
• O’Donnell, Kieran.
• O’Dowd, Fergus.
• O’Mahony, John.
• O’Shea, Brian.
• O’Sullivan, Jan.
• Perry, John.
• Quinn, Ruairí.
• Rabbitte, Pat.
• Reilly, James.
• Ring, Michael.
• Shatter, Alan.
• Sheahan, Tom.
• Sherlock, Seán.
• Shortall, Róisín.
• Stagg, Emmet.
• Timmins, Billy.
• Tuffy, Joanna.
• Upton, Mary.

Tellers: Tá, Deputies Pat Carey and John Cregan; Níl, Deputies Paul Kehoe and Emmet Stagg.

Question declared carried.