I will start with a few of these questions and then pass others to my colleagues. On the first question from Deputy McManus about multiple hospitals, the Pollock report was an external review by a UK health care expert, who has recommended that we have a network of hospitals in Ireland which would be both adult and pediatric. They are the current hospitals, not new ones. The report recommends a network of units for pediatric and adult care, with outreach care in other smaller hospitals. As part of this plan that was discussed beforehand, the report not only clearly outlines the problems but states this is what should happen based upon current practice in the UK and Europe and the international guidelines. I hope that answers the Deputy's question, that it looks specifically at hospitals. For example, St. Vincent's Hospital is the national referral centre for adults and there would also be resourcing for adult units in Galway, Cork, Waterford and Limerick, with smaller satellite units elsewhere, in order that the treatment would be planned on a national basis.
The Deputy's next question on community health or hospital based treatment is an important one. I would make the point that cystic fibrosis is so severe it is like having leukemia for life. There is a major focus on community health where appropriate but when people become acutely sick with a severe infection, in most cases they need to come into hospital or, if it is mild, have intravenous treatment at home. For the vast majority of people where it presents as a significant disease, it is like having leukaemia for life.
Our main focus is to keep them out of hospital. It has been shown internationally that this is not possible unless one has the basic resource in hospitals. While there is community involvement, it must be organised in the same way as with leukemia units and that is what happens. Many good general practitioners are actively involved in the care of patients throughout Ireland but the care is co-ordinated for a variety of reasons, one being, for example, that there is a significant incidence of sudden death among those with cystic fibrosis due to a number of rare complications.
If I am correct, the next question related to money. As I understand it, the Deputy asked have we received any sign of getting it. With all due respect, I suppose that is why we are here today. A report has been published since February. The report was detailed and specific and contained a great deal of analysis on this, but the punch line is that Ireland has a dangerous service which is found nowhere else in Europe.
The report also states clearly that the current position on infection control is a medical hazard but also a legal liability, and could be comparable to that of hepatitis C if an outbreak occurs. That is on the public record since last February.
We have received many supportive comments, from the HSE in particular. My own personal view — I am not a politician — is that we need a commitment from Government to release the funding. The level of funding we are talking about is significant but would deal with this problem now. We believe it is attainable with the support of the committee. In particular, we are talking about asking, if the committee agrees, to have it included in the Estimates for 2006. Things can be done now with a number of specific entities. For example, we have had limited money given in one hospital, but we have not had the ceiling on staff raised and therefore we cannot appoint. If the money is made available, things can begin to change next month. This is one case where the issue at present is money. We have people to take up jobs. At present, what it means is that it is shown internationally that somebody with cystic fibrosis coming into a hospital such as St. Vincent's Hospital, or one in Galway or Cork, should be in a single room because he or she can pick up from anybody else bugs which would not make others sick. At present, patients are not placed in such units and they are picking up other bugs. If we had those resources, it would be dealt with now.
The Deputy raised an important point about the fear of hospitals among cystic fibrosis patients. Unfortunately, that is largely an Irish phenomenon. The fear is because of the inadequate resources. Looking across the water to the UK and at Belfast, we see people who we know do not like hospital come in to units which are designed for them. The care of cystic fibrosis now, as I stated previously, is the worst in Western Europe. Nowhere else comes close. The fear the Deputy articulated is correct but it arises from the lack of resources. If we had the resources, we would have a different attitude.
My understanding is there is a meeting scheduled for the Cystic Fibrosis Association of Ireland with the Minister in October. We are grateful for this and we are looking forward to meeting the Minister. I repeat that we appreciate the committee's support today but we need a great deal of support stating this is a priority issue.
Deputy O'Malley raised an important point in asking why the incidence is high. It is highest in the Republic of Ireland. The reasons are not clear but, historically, there is evidence that being a carrier of the cystic fibrosis gene protects one from diarrhoeal illnesses, that is, illnesses which involve severe diarrhoea. My suspicion, which cannot be confirmed, is that cystic fibrosis carriers at the time of the famine 150 years ago were more likely to live than those who were not and being a carrier was protective. That is supposition. The incidence is higher. It is higher than in the North of Ireland and that is a political issue as much as anything else.
The Deputy raised an important point about services in the UK versus in the North of Ireland. On crossing the Border, care for cystic fibrosis is provided night and day. For example, the unit in Belfast has half the number of patients of the unit in St. Vincent's hospital. The Belfast unit has three cystic fibrosis consultants and single rooms. None of that applies anywhere in the South. The level of care provided today in the North is better than that provided here. The level of care that they had ten years ago exceeds the care we can give now, in terms of facilities but also personnel. Let me give one example of what that means which relates to the Deputy's next point. Most hospitals in Ireland with cystic fibrosis consultants would have one consultant. In many places the consultants will not take holidays or if somebody is away on holidays, there is no consultant providing coverage. That would never happen in the UK. We have 3.3 consultants. This means that we have a number of consultants who spend one tenth of their time on cystic fibrosis.
Cystic fibrosis is both an adult and a pediatric disease. There are respiratory consultants in adult care trained in cystic fibrosis. Similarly there are such consultants in pediatrics. I acknowledge that there are other people who help out but the position is similar to that with leukaemia where we would not want our children with leukaemia looked after by somebody who is not trained in that area. We need to have such care as is provided internationally, in Europe and in the UK. When one visits their units, they have people who are trained in that area. We do not have that in Ireland, apart from a total of 3.3 people who are specialised.
I am speaking on behalf of the group and I will be quiet now, but I hope I have answered some of these questions. I would return to the basic point, that many people have come to accept a level of care and being afraid of going to hospital. The figures show that the care in the North of Ireland is superior. Clearly outlined guidelines of what should happen were published. The UK meets them. The North of Ireland meets them. Ireland does not come near meeting any of the criteria. We have the worst cystic fibrosis care in Western Europe.
