Cystic fibrosis and broken promises
As the parents of a two-year-old with the condition we desperately urge the HSE via James Reilly and the management at CUH, especially Tony McNamara, to fulfil the promise of ring-fencing the agreed beds for cystic fibrosis patients.
Build4life is a voluntary charity run by parents, family and friends of people with CF and the undertaking of raising €2.3 million to renovate ward 5B in CUH was done only because the charity wanted to assure CF patients of beds in the hospital. The public should also be aware that the money raised is funding 20 isolated beds, only eight of which Build4life are asking to be ring-fenced. The others will be available for other respiratory patients and the reason Build4life agreed to fund these extra beds was because it was told there was no government funding available for the project and it would not go ahead if Bulid4life didn’t foot the entire bill. Now that the money is raised the management has broken its promise and wants the charity to sign over this money with no guarantee of CF beds. This is an outrageous situation.
Being relatively new to the world of cystic fibrosis we have to express our shock at discovering how ill-equipped the facilities in CUH and many other Irish hospitals are for treating people with CF. When our son was diagnosed at three weeks old it was the most devastating time of our lives and we desperately needed to hear positive and hopeful news about his available treatment. Considering we were informed that Ireland has the highest rates of CF in the world with 1-in-19 of us carrying the gene we assumed Irish hospitals must be at the cutting edge of CF treatment and care. While the CF teams available are wonderful we were completely gobsmacked to discover there are no specialist isolated facilities for children in CUH and as such these patients are at constant risk of cross infection from being exposed to a general hospital environment. Every one of our visits to the hospital fills us with dread as we hope desperately that our little boy won’t pick up a dangerous infection.
Up until 2011 it was the same for adults, there were zero specialist facilities available. It was the voluntary charity Build4life led by parent Joe Browne that first decided this was no longer acceptable. Build4life raised €450,000 to open a state-of-the-art day clinic for adults with CF and this current project in ward 5B for isolated beds was to be the next dedicated facility for adult patients in CUH. The hope for us as parents is that Build4life will get the guarantee on these beds and continue its wonderful work until children with CF attending CUH also have specialist day clinics and in-patient beds. Our worry now is that Build4life will become disillusioned by the broken promises of the CUH management and the HSE and will not continue with their lifesaving work. In the event of that happening we have very little hope that the government will provide funding for the specialist isolated facilities that all Irish adults and children with cystic fibrosis so desperately need and deserve. If these facilities don’t become a reality in CUH we can’t picture ourselves remaining in Ireland with our family.
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