Cystic fibrosis is a disease which receives neither enough public attention nor governmental support, writes Kate Rothwell
Cystic fibrosis. If you don’t know anyone who suffers from it, then you may not be aware of it. Or maybe you’ve heard the term crop up now and again in the news, being mentioned alongside words such as “HSE”, “hospital” and “funding”.
You might think that cystic fibrosis is just yet another cause that could always do with more support and will always have a few people running in the name of its research in charity marathons. Furthermore, one you might assume that it will, from time to time, be the reason behind RTÉ’s latest heartstring-tugging report of a child suffering from a debilitating disease on the Six One News.
For those who have never known anyone who lives or has lived with CF, it might all seem like more of the same – another worthy cause, another illness that we are grateful to have been spared from. The outlook of those who have first-hand experience of CF however, is markedly different.
Cystic fibrosis, or mucoviscidosis, is a life-threatening inherited disease that mostly affects the lungs and digestive system. Those who suffer from CF face malnutrition, constant chest infections and a greatly reduced life expectancy.
There are over 1,100 people with CF living in Ireland, meaning that we have the highest proportion of CF patients in the world – four times the rate of other EU states or the US. Moreover, almost half of those who have CF in Ireland are children.
The disease gets steadily worse, and while the life expectancy of CF patients has increased over the last number of years, the life expectancy in Ireland still lags behind that of Britain and the US. Few people with CF will live in to their forties, while women with CF generally have a life expectancy that is even three to five years lower than that of men. The facts and figures are forever changing but mean little to those who must face the prospect of ever-worsening health until an eventual all-too-early death.
The contract for the building of a cystic fibrosis unit at St. Vincent’s Hospital in Dublin has, after significant delays (the need for such a facility was identified in a report in 2005), finally been signed.
The development, which comes at a cost of over €20 million, is due to be completed in April 2012. The unit is bound to be an excellent facility, but it will not by any means be the end to all of Ireland’s CF woes, as only 30-35 of the 100 single en-suite are to be dedicated specifically to CF patients.
Funds are limited, and there are of course plenty of patients with other conditions, in this case pertaining to liver disease and cancer, in urgent need of the treatment that will be provided at this facility.
The provision of individual units will reduce the risk of cross-contamination, which is a huge and dangerous issue for patients with CF. The current conditions for CF patients in St. Vincent’s Hospital, which is the national referral centre for people with CF, have been subject to heavy criticism. Only eight of the 554 beds at the hospital are single rooms dedicated to CF patients.
The Cystic Fibrosis Association of Ireland is urging for the current conditions at the hospital to be improved, while also calling for more isolation rooms to be installed. Meanwhile, the new unit is being built, but they are also stressing that patients should continue to visit the hospital for treatment, in spite of the poor feedback that the facilities have received.
Orla Tinsley gave an insight into her own experience of having CF in an article in the Irish Times in 2005, and has since become an identifiable face for people with CF in Ireland.
In another piece printed in the Irish Times last month, Tinsley made the vital point that while the facilities at St. Vincent’s Hospital are unacceptable, this is not the fault of the staff who work there. The system in place puts staff in a situation where they cannot facilitate patients in an ideal manner, simply because they have not been provided with the resources which would enable them to do so.
Considering that the medical facilities available to CF patients were inadequate even at the height of the Celtic Tiger, it is hard to imagine how these patients will fare post-Budget 2011. An overdue unit has been promised, but it will be at least 18 months before it is operational – as to whether funding or staff shortages will interfere with its development in the meantime, only time will tell.
Fears that a state grant of €1 million that goes towards medical research will be cut in the upcoming budget seem legitimate and such a move would not bode well for the years ahead. The current conditions for cystic fibrosis patients are objectionable; the future prospects are that of an improved, but still wholly unsatisfactory situation.