Mary Upton (Dublin South Central, Labour)

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 home. 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 life and ensuring a decent quality of life. 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.

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