Mary Upton (Dublin South Central, Labour)

I welcome the opportunity to speak on this motion this evening. It is an incredible indictment of the Government, of the Department of Health and Children and the HSE that it is left to the courage of a young patient to get a promise of some action regarding the treatment of cystic fibrosis, a condition that claimed 30 young lives in 2007. It is not as though the HSE is not aware of the problem. Management boards of hospitals, the Department of Health and Children and the HSE are all in key positions to make changes, so why has there been stalemate for so many years?

This evening, I simply want answers to the following questions arising mainly from the reply given by the Minister of State last night. According to the Minister of State, 44 additional staff to deal with cystic fibrosis, CF, patients have been appointed throughout the country. Where exactly are they located? What positions do they hold? What are the terms of their appointments? Have the posts for the 37 promised staff actually been advertised? What exactly are the posts and where will they be located? I want no more fudge, but some simple facts.

I wish to comment on the provision of facilities in St. Vincent's Hospital. I want to declare a personal interest in this saga and I can vouch for the appalling conditions to which vulnerable young adults were and are exposed in wards where CF patients are treated. I can also vouch for the dedication and professionalism of the staff there. Any progress in the provision of additional isolation units in St. Vincent's Hospital is welcome, but I remind the Minister of State that there are between 18 and 25 CF patients at any one time at this of year in the hospital. Approximately another ten are awaiting beds there. Can the Government at least plan for the seasonal needs of CF patients? Otherwise, we will all be back again this time next year with Joe Duffy leading the attack again.

Can the Minister of State confirm that the promised units in St. Vincent's Hospital will be ring-fenced for CF patients? Why is not possible to provide further prefab space for additional units? I understand that this can be done if the will is there to do it. Will the units proposed for St. Mark's ward and St. Camillus's ward in the hospital be en suite? This is not clear from any press statements I have seen. When can we expect that CF patients will be admitted directly to wards without the trauma of lying on a trolley or sitting on a chair in the accident and emergency ward, often for days, surrounded by other unfortunate patients with a variety of infections? What plans are proposed for other centres around the country?

When will newborn babies be routinely screened for CF as occurs for other conditions and in other countries? Why is it that only one CF lung transplant has been carried out in the Mater Hospital to date? What exactly is the arrangement between the Mater Hospital and Freeman Hospital in Newcastle regarding lung transplants? How many transplants were carried out in 2006 and 2007 in Newcastle on Irish patients? What is the commitment from the hospital in Newcastle to the Government on behalf of CF patients in Ireland? What is the financial arrangement between the Department of Health and Children here and Freeman Hospital regarding transplants for CF patients?

I want to highlight the need for a co-ordinated and unified approach to the management of CF patients post-transplant. A single centre of excellence is needed where all aspects before and after transplants can be carried out. Cystic fibrosis does not go away just because one is lucky enough to get a transplant. Very specific challenges have to be addressed for post-transplant cystic fibrosis patients. That facility is not available in this country at the moment. It is split between the Mater and a centre of excellence at St. Vincent's, each with a specific speciality than can be delivered effectively. However, the two have to be combined for the sake of cystic fibrosis patients.

Where is the national reference microbiology laboratory that was recommended by Pollock? This is absolutely crucial, given the changing and rapid environment in which micro-organisms are affecting cystic fibrosis patients, literally almost on a weekly basis. The most up-to-date facilities and services are needed to ensure the best treatment for those bacteria. What about the national register and the need for committed funding? This happens on a year to year basis and it is no way to provide a reliable and ongoing service. There must be a long-term commitment, providing money to ensure the register can be updated. We are very much dependent on ensuring we have the correct number of patients on that register. To do that the money must be made available to allow people to get on with that job.

Paediatric services are just as much in need of quality facilities as the adult units. What provisions are being made to upgrade these facilities in Crumlin, for example? When will the HSE provide replies to parliamentary questions that contain some real information.

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