Fergal Browne (Fine Gael)

I welcome the Minister of State at the Department of Health and Children, Deputy Tim O'Malley, to the House. I wish to raise the serious topic of cystic fibrosis and the care meted out to such patients. I acknowledge the Government's recent allocation of €4.78 million which is a welcome step. No. 26, motion 7, on the Order Paper calls on the Government to take steps to immediately rectify the position. The motion notes that:

Ireland has one of the highest incidences of cystic fibrosis in the world;

cystic fibrosis is Ireland's most common life threatening genetically inherited disease with one in every 20 people carrying the recessive cystic fibrosis gene;

people with cystic fibrosis rely heavily on a health system that is inadequately staffed and resourced;

the survival statistics relating to cystic fibrosis is directly proportional to the quality of the health care system, and Ireland sadly falls well below internationally accepted norms;

with the correct health care, a large proportion of people with cystic fibrosis will be able to live a normal productive life; and

Seanad Éireann calls on the Government to take immediate steps to provide adequate increased funding and resources to help sufferers of this condition.

I decided to raise the matter on the Adjournment to allow the Minister to update the House on what progress has been made in this area. The statistics are startling in that there is a difference of nine years in life expectancy for sufferers of cystic fibrosis in the Republic as opposed to Northern Ireland. Literally a two-hour journey from here a cystic fibrosis sufferer can have a different lifespan. That is not satisfactory for anyone concerned.

The major problem for cystic fibrosis sufferers is that there are not enough beds in isolation units. Such sufferers are put in wards with patients suffering from other illnesses, including the common flu. What struck me when I heard a presentation by the Cystic Fibrosis Association of Ireland in Buswells Hotel a few months ago was that their biggest fear was what they would contract while in the hospital. It was not necessarily going into hospital because they accept that as part of the norm.

I have heard of people in Carlow whose child spent three days on a chair in a public hospital in Dublin; the parents were so exasperated they took their daughter out of the hospital. In other cases cystic fibrosis sufferers have had to be admitted through the accident and emergency unit. While the Government has allocated €4.78 million towards the care of cystic fibrosis sufferers, will the Minister of State specify exactly where that money will be spent?

According to the Cystic Fibrosis Association of Ireland the staffing levels for people with cystic fibrosis are more than 400% below the minimum accepted standards and the lack of segregation and isolation facilities puts patients' lives at risk on a daily basis. At the national adult referral centre there is just one consultant to treat 60% of the adult cystic fibrosis population in the State. Many patients have to be admitted via the accident and emergency unit because there are no beds available in the ward. Some who have to wait 24 hours to be admitted are often exposed to serious risk of infection. There is a need for proper facilities — single rooms en-suite — in all 13 cystic fibrosis centres as well as a 30-bed unit and centre at St. Vincent's Hospital.

There was great news in January when a double lung transplant operation took place in the Mater Hospital. It is still early days but hopefully it can be replicated in the future. It is hoped to do ten or more lung transplant operations in the coming year. Obviously that has a huge bearing on cystic fibrosis suffers. It is worth pointing out that the double lung transplant was not for a cystic fibrosis sufferer but it is obviously connected.

Ireland is unique in having an excellent organ donor rate of approximately 22 per 1 million of population, the fourth highest in the EU and twice the rate of the UK. We should build on that number when working towards helping patients with cystic fibrosis. I was amazed to learn there is no legislation covering the issue of organ donation. I had always assumed that if one had an organ donor card on one's person — God forbid a serious accident happened — that automatically one's organs were donated. It emerged recently that there is no law covering this area and that one's next-of-kin can decide whether one's organs are donated. That is an area that should be looked at again because it has implications for sufferers of cystic fibrosis.

The average age at death of a cystic fibrosis sufferer is 21.5 years but in Northern Ireland it is 30 years of age. That is not satisfactory for anybody involved. I hope the Minister of State will inform us of a new unit for St. Vincent's Hospital for which they are crying out. I hope the €4.78 million allocated for sufferers of cystic fibrosis is only a start. This area has been underfunded for many years. Given the high rate of cystic fibrosis it is vital that the Minister of State outlines what progress has been made. I hope services can be put in place in order that Irish patients do not automatically have to travel to England for transplants in some cases. I hope we can tie in with the success of the double lung transplant operation in the Mater Hospital in January.