Professor Charles Gallagher:

I appear before the committee as the clinical lead for cystic fibrosis nationally. In doing so I am really appearing on behalf of the CF carers of Ireland - the nurses, physiotherapists, dieticians, psychologists and doctors who are involved in CF care. I have the role of clinical lead for the HSE, but I appear on their behalf. I will give the committee a brief overview and I will be happy to address any questions or comments from members afterwards.

Members already have a very good summary of the national issue. There are approximately 1,150 people with cystic fibrosis in the Republic of Ireland. One in 19 of us carries the CF gene and roughly one in every 1,400 live births has cystic fibrosis. Those are the bare statistics, but they do not address the issue that for each person with cystic fibrosis there is a family and community affected by it. The good news story is that CF is changing. Twenty or 25 years ago cystic fibrosis was always a severe disease in childhood and very few people lived to adulthood. Things are changing. There are now slightly more adults than children with cystic fibrosis. In childhood cystic fibrosis is generally mild, with some exceptions. Most children are treated as outpatients, with intermittent hospital stays. However, once they reach the age of 18 to 20 years, the disease becomes somewhat more severe because they have had the disease for longer. I must emphasise that there are people in their 20s, 30s, 40s and 50s with cystic fibrosis. They are in every walk of life. Our oldest patients are in their 60s, so things are changing. However, that means the need for care is changing as well.

As people have the disease longer in adult life there is a greater focus on hospital care. We really have a partnership between the CF patient community, the CF carers whom I represent, the HSE, the hospitals and the Government. Things are moving on. There are a number of CF centres throughout the country and they are working in collaboration at all times. There are major centres around the country. The national adult centre is in St. Vincent's Hospital but there are also adult centres in Cork, in Limerick which caters for the Tipperary, Limerick and Clare area, and in Galway. In Dublin there is St. Vincent's Hospital and Beaumont Hospital. There are also other smaller centres. In paediatrics we have units in Cork University Hospital, Mid-Western Regional Hospital in Limerick, University College Hospital Galway, in Drogheda, Waterford and in hospitals in Dublin. All of these hospitals and centres work together.

The spectrum of care always encompasses outpatient care and inpatient care but the focus or balance changes.

As I mentioned, most of the care in childhood is on an outpatient basis, with little need for hospitalisation. However, as children reach adult life, the need for inpatient care increases. This is an international phenomenon. Ireland is not unique in this regard.

As I stated previously, Ireland has the greatest instance of cystic fibrosis in the world. For reasons that are not yet fully clear, Irish people also have the most severe cystic fibrosis in the world. When compared with the Six Counties, Canada, the United States or Europe, CF in Ireland is on average more severe. While this is not of itself a bad news story, it tells us that the need for care here is different. As I mentioned, there are currently people in this country with CF who are in their forties and fifties. We want them to live to be pensioners. I have told our geriatricians that I want to send people with cystic fibrosis on to them in the future. While this is not yet happening, it will happen.

Organisational care revolves around the CF centres throughout the country. We now have an efficient newborn screening programme which commenced last year and allows us to diagnose children at an early stage rather than waiting for symptoms to develop. We can now intervene at an earlier stage than we would have done ten or 15 years ago. This will in time result in improved outcomes for patients. Obviously, existing patients need the care delivered by the paediatric and adult centres throughout Ireland working together. As I mentioned, we have developed a partnership with patients and the patient organisations and work with the HSE, clinicians and CF teams around the country and hospital management to provide care for people with cystic fibrosis. This is organised on a national basis and is entitled the national clinical programme. This is the encapsulation of what has happened up to now. During the past seven or eight years, all of the CF centres have come together and agreed guidelines on resourcing of CF care, the need for outpatient care and inpatient care and how this can be organised. Ultimately, it is not what I, my team or the hospitals do but what is done for each person with cystic fibrosis and their families, who are among the bravest in our society. Each person with cystic fibrosis battles with the illness from the time he or she is born. If I become ill next year, I will have enjoyed good health beforehand. There is no time of good health prior to or after cystic fibrosis diagnosis. Cystic fibrosis sufferers and their families deal with the condition on a daily basis. The average patient spends at least two hours per day receiving treatment. These people battle with cystic fibrosis with the support of the CF teams, hospitals and the HSE under the leadership of Mr. O'Dwyer.

That is a brief overview of what is happening in this area. We are seeing an improvement in people in their forties and fifties. However, there is a need for ongoing detailed care to allow people with cystic fibrosis to have an improved quality of life for them and their families now and into the future.