John O'Mahony (Mayo, Fine Gael)

I am grateful for the opportunity to contribute to this Fine Gael Private Members' motion highlighting major inadequacies in our health service and I commend Deputy O'Reilly for his sustained efforts to better the lot of patients in our hospitals. I want to concentrate on the plight of cystic fibrosis sufferers. The fact that improvements for cystic fibrosis sufferers are dependent on a deal between an Independent Deputy and the Government reveals the bizarre manner in which health services are provided in Ireland and suggests shades of a banana republic.

In many ways, the 1,100 cystic sufferers in the Republic of Ireland, including the 39 in County Mayo, have been the forgotten patients in our health service. It is sad that as well as having to cope with inadequate services, these patients and their families had to undertake a national media campaign to get their plight and the lack of services on the agenda. We can only imagine the turmoil in the lives of these people as they try to cope with their need for constant care and treatment while having to fight in public for what should be their right. They are torn between their admiration and appreciation for the nurses and doctors, who give them such great care in impossible and sometimes dangerous circumstances in unsuitable hospital wards, and their frustration at the neglect by the Government over the years of services for cystic fibrosis sufferers.

This morning, I spoke with a parent who was in Mayo General Hospital with her daughter, a cystic fibrosis patient. In between bringing her other child to school and collecting her at 2 p.m. she had to be in the hospital. While she was at pains to praise the commitment from the doctors and nurses on the frontline, she also criticised the lack of isolation units in the hospital, the fact that adults have to be treated in the paediatric ward, the danger of cross-infection and the impossible demands placed on the half-time nurse allocated to cystic fibrosis sufferers in the hospital. The other big fear that cystic fibrosis sufferers and their families have is that even if the Pollock report is implemented, the facilities already in place will be centralised, thereby making a normal life impossible for anyone in the affected families.

I received an e-mail from the parents of two children with cystic fibrosis, one of whom is eight years of age and the other who is 20 months. The first child was diagnosed within 48 hours of birth and the other was confirmed as having the condition within a month of blood tests being taken after their birth at Mayo General Hospital. In so far as comparisons could be made with cystic fibrosis cases which attract publicity, these two children have led straightforward lives with few enough complications. To date, the second child has been hospitalised on one occasion for intravenous antibiotics while the first child has, on average, been hospitalised thrice yearly for the same procedure since they were five. Both children receive the normal routine care that is associated with the condition.

The needs of people with cystic fibrosis has attracted much publicity and this was particularly evident in the run-up to the recent general election. Everyone involved knows about the necessity of isolation wards and en suite facilities. However, Mayo has only one cystic fibrosis nurse who, like all normal people, needs to take annual leave. Unfortunately, a void appears when she is on leave. Earlier this year, one of the children I mentioned earlier was hospitalised when the nurse was on leave and the nurse who normally takes on her duties was ill, with the result that the service was disrupted.

Apart from the needs of Mayo General Hospital, other issues need to be addressed. We are continually told about the dangers of cross-infection, yet the parents of these children are not provided with any option other than hospital visits for their care. If Professor Drumm and the HSE are genuinely serious about reducing the dependency on hospitalisation, why can the role of the community nurse and the local GP not be integrated into the care of those with cystic fibrosis? At this stage, the parents simply feel that no one cares about them. A bell should have rung two years ago when the second child was born but it did not. The child's condition had to be recorded and the penny should have dropped that they were the second with the condition to be born into the family. The child's parents were and are devastated but they have received no consideration.

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