Madam, - I refer to the extraordinary article by Orla Tinsley concerning the state of the health services and, in particular, the treatment of cystic fibrosis (Opinion & Analysis, May 22nd). What courage and what an inspiration to everyone who craves a quality health service. This article should be compulsory reading for every politician in this country. - Yours, etc,
MARTIN O'HALLORAN, Castleknock Park, Dublin 15.
Madam, - Articulate, passionate and supremely courageous are words that come to mind to describe Orla Tinsley. Deplorable, shameful and overwhelmingly depressing are reactions to reading about the punishment she has had to endure for being a victim of cystic fibrosis in the Republic of Ireland. - Yours, etc,
SEAMUS McKENNA, Farrenboley Park, Windy Arbour, Dublin 14.
Madam, - When launching the pre-election campaign of the Cystic Fibrosis Association of Ireland we highlighted the main issues of importance to people with cystic fibrosis and what we are expecting from whoever will be in power after the general election. Among the eight main points that we called for were:
1.The release and implementation of the findings of the HSE working group on CF without any further delay.
2.A national CF referral centre needs to be built immediately at St Vincent's University Hospital.
3.A specialist CF unit at Cork University Hospital needs to be approved by September 2007.
4.The planning process for other new specialist CF centres needs to begin by the end of the year, particularly at Galway University Hospital.
5.Facilities at all the Dublin children's hospitals must be upgraded to allow for effective isolation of CF patients.
We are being very vocal because our members are sick waiting. They are sick waiting for admission to a hospital bed and when they are finally admitted they are treated in wards that do not meet internationally accepted norms for CF care. They are young people who have been living with a chronic disease since birth and who want the opportunity to live their lives to the full.
Many statistics have been quoted in the media regarding the projected lifespan of the average person with cystic fibrosis. Quoting such statistics can cause confusion and upset and for this very reason we now avoid referring to life expectancy, median age at death, and mean age of survival. The fact is that we do not know what the average life expectancy is. We do know that our CF population compared with the national population does start to decrease from the age of 25. We do know that with improved medical treatments the CF survival trends for people with CF is improving each year.
Cystic fibrosis is a genetically inherited disease for which there currently is no cure but there are new treatments under development which we hope will significantly improve a person with CF's quality of life and may allow them in the future to live a perfectly normal life. We must prioritise the provision of a world-class standard of care for people with CF so that they are kept in the best quality of health to be able to respond to these new treatments.
Our challenge to the new government is to provide suitable facilities where people with cystic fibrosis can receive their treatment without compromising their health and exposing them to pathogens that could seriously influence their long-term survival. - Yours, etc,
GODFREY J FLETCHER, Chief Executive, Cystic Fibrosis Association of Ireland, Lower Rathmines Road, Dublin 6.
Madam, - I would like to thank Orla Tinsley for sharing her story and highlighting the truly awful hospital conditions that cystic fibrosis suffers have to endure. I can only hope our future taoiseach will act with the dignity shown by young Orla, and move quickly and decisively to sort out our third-world health service, which is such an injustice to CF sufferers. - Yours, etc,
MARK MELIA, Glendale, Leixlip, Co Kildare.