John Crown (Independent)
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My understanding is that the international guidelines are clear on this matter. For a cohort of approximately 340 adult cystic fibrosis patients there should be 34 beds. That is what is needed and any departure from 34 beds is a departure from international guidelines. The figure of 34 beds was agreed, but 24 designated beds were delivered and an additional 14 single inpatient rooms were promised. Where are they? Do they exist? The hospital in which I work has patients with complex illnesses who have a known requirement for single rooms with isolated toilet facilities for people with MRSA, VRE, ESBL-producing bacteria and the various vomiting bugs, including the norovirus which has been prominent recently. In addition, because of general medicine, there will be a requirement for single isolation rooms for patients who are disturbed or terminally ill and whose families need to be beside them without having large numbers of other people present.

There will always be a demand for beds in single rooms in the hospital. It requires clarification, therefore, when the HSE says it is giving 20 of the 34 because it will designate 14 others. One would have thought, at a bare minimum, that if we were designating 14 additional beds from outside the specialist unit, the requirement that there would always be one or two inpatient rooms available for emergencies would be respected. Were the bed managers instructed to protect those 14 beds and then particularly to protect the one to two inpatient room beds? I would like some clarification on that. Has any attempt been made to ensure that when the 14 beds are activated they are actually segregated, and that the staff there have some facility, experience and expertise in dealing with patients with cystic fibrosis with particular needs?

Patients with cystic fibrosis are appropriately quick to point out deficiencies in their own care. That is because they are good at it. As Professor Gallagher told us, they have been going through this all their lives. They know if somebody makes a mistake or if the nurse dealing with them is inexperienced in cystic fibrosis. They also know if a doctor is not following the hygiene procedures that doctors dealing with cystic fibrosis patients must carry out.

Have we got a guarantee that if these beds are not all in what - let us face it - should be a 34-bed unit or they are not all in the 20-bed unit, there is at least an appropriate level of step-down of expertise, concentrated geographically, for the other 14 beds?