James Reilly (Dublin North, Fine Gael)

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 suffers of 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 of 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 a nd 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 should 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 for 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.

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