Jan O'Sullivan (Limerick East, Labour)

The courage shown by a number of young adults with cystic fibrosis, people like Orla Tinsley and Jennifer Tormey who told their stories on the national airwaves, must be rewarded with firm commitment and action by the Minister for Health and Children and the HSE. That is why I am raising this matter in the Dáil today.

Their harrowing stories expose a system that is not responding to their most basic need, namely, to be able to get to hospital and receive treatment without being exposed to the kind of infections that could so easily shorten, or even end, their lives. It is vital for cystic fibrosis patients to be able to access treatment in a dedicated unit with individual rooms, each with en suite bathrooms. This does not seem too much to ask in a country as rich as ours. I must point out that we did not only find out about this issue on the airwaves over the past few weeks. In fact, Doctor Ron Pollock, who conducted a survey and independent review relating to cystic fibrosis, published his report on Monday, 7 February 2005. At that time, he said that the majority of adults with cystic fibrosis are being treated in facilities that are dangerous. That was in February 2005. Tomorrow is the first day of February 2008.

It is entirely wrong that sick people have to resort to appealing for help on a radio programme to get the health care to which they are entitled. However, by taking that action, despite its toll on their health, they have succeeded in getting certain commitments which I wish to ensure are clearly stated on the record of this Parliament. My understanding is that a temporary unit will be provided at St. Vincent's Hospital in Dublin, catering for 14 patients at a time. I understand from the Minister that it will cater for six initially, and then a further eight patients, totalling 14, by the end of the summer of 2008. I ask the Minister of State, Deputy Devins, to confirm that this is the intention and that agreement has been reached with the hospital and the HSE to make this happen. Further, I ask the Minister of State to clarify whether the rooms will have en suite facilities that will ensure there is no cross-infection.

I also understand there is a commitment to providing a 34 bed dedicated cystic fibrosis unit at St. Vincent's Hospital, as part of a larger development. Again, I ask the Minister of State to confirm this on the record and to indicate the anticipated time frame. The Minister said earlier it would be late 2010 when this would be finished. I would like that to be placed on the record and the process speeded up, if at all possible. Late 2010 is quite a long time to wait for this facility to be up and running fully.

These are the most pressing issues on which clear commitments are needed. However, a comprehensive service must address the requirements of patients all over the country. Dr. Gerard Canny, of the cystic fibrosis unit in Our Lady's Hospital for Sick Children in Crumlin, wrote a letter which was published in today's newspapers, in which he stresses the need for a continuum of care from babyhood to adulthood, with multi-disciplinary teams, as well as dedicated inpatient wards with single, en suite rooms to prevent cross-infection.

He argues for the introduction of a screening programme for newborns to ensure early diagnosis. Such a programme has been in place in Northern Ireland since 1983. It produces much better outcomes because early detection means early treatment and provision of care.

I commend the bravery of Orla Tinsley, Jennifer Tormey and the many young people and families — in some cases, members of those families have died of cystic fibrosis at an early age — who took the initiative, went on the airwaves and continue to campaign for facilities. That they have done something they should not have needed to do is a shame on us. They deserve clarity and urgency concerning what will occur. In particular, they do not deserve to subject themselves to the danger of infection by attending accident and emergency departments and wards comprising people with a variety of illnesses, including hospital-transmitted illnesses such as MRSA and C. difficile. We must respond to these young people and I want to ensure a commitment to them on the record of the House. We who have been elected by the people must ensure that their needs are met as quickly and comprehensively as possible. I look forward to the Minister of State putting those commitments on the record.

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