94 HEALTH MATTERS cystic fibrosis


ASSOCIATION PLAYS KEY ROLE AS ADVOCATE FOR PEOPLE WITH CYSTIC FIBROSIS


2009 is the year that may well be regarded as one of the most important in the history of the Cystic Fibrosis Association of Ireland (CFAI) because of the progress made towards a more comprehensive framework of Cystic Fibrosis (CF) services, writes Philip Watt, Chief Executive of the Cystic Fibrosis Association of Ireland.


here is emerging evidence that the investment in CF services in Ireland, particularly in specialised health staff that make up multi-disciplinary teams in designated CF Centres around the country, is having a direct impact on better patient services and care in Ireland. However, it is also evident that progress that has been made remains piecemeal and there remain significant gaps and weaknesses in the implementation of agreed government policy. The CFAI is a voluntary body that draws


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together mainly parents and people with CF, but also clinicians, specialised health staff and general supporters. It was established in 1963 and its key role today is to advocate and fundraise for better CF services, and to support research and provide advice and other services to our members. Cystic Fibrosis is the most prevalent inherited disease in Ireland, with one in 19 of the population carriers of the Cystic fibrosis gene and around 1,300 people with CF. CF produces a sticky mucus and primarily affects the lungs.


The digestive system, as well as other organs in the body, is also affected by CF. Cystic Fibrosis is managed through a mix of regular hospital check-ups and associated treatment, an intensive exercise and physiotherapy regime, and enzymes before meals to aid digestion. The context in which we work as an association is increasingly challenging. Of particular concern includes: • The increasing likelihood that future government funding for badly needed new capital projects related to CF


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