The CF Situation

national | miscellaneous | opinion/analysis

Friday April 04, 2008 18:58

by Joe Lawlor

lookup88 at hotmail dot com

Twenty ten is the date the HSE say a Cystic Fibrosis unit will be built. Proudly they boast of “fast-tracking” this process to deliver the care that has being so desperately needed for years. This “spin” is never more quickly put into perspective than when a mother or father, brother or sister weep and stare at tossed soil which is beginning to settle where their loved one lays. Peacefully, yet cold, with the colours of nature and heart broken messages of love and memories at any of the thirty graves.

Twenty ten is the date the HSE say a Cystic Fibrosis unit will be built. Proudly they boast of “fast-tracking” this process to deliver the care that has being so desperately needed for years. This “spin” is never more quickly put into perspective than when a mother or father, brother or sister weep and stare at tossed soil which is beginning to settle where their loved one lays. Peacefully, yet cold, with the colours of nature and heart broken messages of love and memories at any of the thirty graves.

Thirty young Irish people died last year from Cystic Fibrosis in Ireland. Ireland has the highest rate of Cystic Fibrosis sufferers in the world and yet it has the most poorly resourced infrastructure in the western world according to Dr. Gallagher a leading CF specialists talking on a radio interview in January ’08. “CF is like having leukaemia for life”, he explains. Fourteen years ago a dedicated Cystic Fibrosis unit was promised. Unlike in Ireland basic care for a person with CF in other developed countries means an isolated room with an ensuite due to the fact that a CF sufferers with an infection would have a very low immune system and become very susceptible to cross-infection and dreaded super-bugs such as MRSA and C. Diff. Treatment for the illness is highly specialized yet patients who suffer from this disease have to endure A&E admissions. I mean you certainly wouldn’t dream of forcing a leukaemia patient to be admitted through A&E would you? Common sense says no, something that is seriously lacking in the Health system today. CF patients however must be admitted through A&E sometimes being left on a trolley where they can’t swing their legs left or right, only resorting to shimming their bum down to hop off the trolley. All this time they are trying to receive their six or more IV antibiotics every day for a stint of weeks at a time, not to mention the numerous oral antibiotics they also have to endure. Admitted two, three, four or more times a year. Then the “lucky ones”, who get a bed, are mostly put on a general ward with up to six other patients in the same room, all with various different ailments. Some suffers of CF are even put in rooms or on wards where a person(s) has a super-bug.

These mind boggling scenarios were all described in detail on national radio, TV, and papers by sufferers and yet the HSE claims there is no “proof”, that CF sufferers die prematurely in Ireland compared to our other western neighbours. The same health system failed to see a problem with the services and facilities until it was highlighted in the Pollack Report (2005), done by an independent adjudicator. In it Dr. Pollack sites “dangerous and inadequate facilities” and “inadequate” staffing levels. The problems within the care and treatment for CF patients would have being obvious to anyone who worked or cared for people with Cystic Fibrosis and easily explained in part however the HSE needed “proof”, of this fact and someone else had to do their job for them. At that they then set up a “working group” to “examine” the findings so in the end the HSE needed “proof” of the proof! A pattern emerges from this tongue twister, which is very simple, but disturbing. It’s not about how best to improve treatment and care in our public health system no matter the cost. No it’s a simple case of watching one’s own back, our image and of course our budget. Wheather there is even blatant bad care or treatment it’s a case of “damage control” through hiring of PR firms weather it be for the hospital or HSE.

The trend within the health systems hierarchy is frightening to anyone who might know very little about the system but to those who deal with it on a daily basis it's sheer utter frustration and anger with the lack of movement and progress to provide the best and most up-to-date care and facilities available. Less emphasis on patient care no matter the cost, instead it’s cut backs and budget concerns. Fourteen years ago a CF unit was promised and it will be almost twenty years before one is (hopefully) up and running, more likely twenty eleven contrary to the twenty ten "boast". Countless bugs, stress, A&E sagas, open wards where bugs and infections run free and general mental strain as well have all accumulated to the premature deaths of these Cystic Fibrosis sufferers. When it’s said they died from Cystic Fibrosis the next time take into account all of what has being said about the plight of CF sufferers in Ireland and that last year most who died were in their early twenties but we lack “proof” enough for the HSE. The next time the HSE “spin doctors”, spout words like “fast-tracking” , ask them to visit a grave of any of the deceased 22 or 24 year old CF sufferer and get them to explain in detail the term “fast-tracking” to them. As just with the calls for years for adequate care and facilities for people with Cystic Fibrosis it would fall on deaf ears, an eerie cold silence would be bestowed after the explanation was finished, maybe then they would understand the seriousness of their failings to the most vulnerable in our public health system. I agree with the call from Councils in Wexford, Limerick & one Dublin Council which all passed a motion unanimously, calling for the disbandment of the HSE and a proper fair public health system to be set up. Lets hope other Councils around the country have the political will to pass this motion as well or else these “cracks” in our public health system will soon become “holes” and many of the most vulnerable patients will fall through, only to become another statistic of many in our ailing public health system.

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Comments (2 of 2)

Indeed, empty promises

by Terence

Sun Apr 06, 2008 12:59

Indeed, as long as I can remember, the politicians of the day and coming up to any election have always made big splashes about their new plans for the health service. This usually involves 10 year plans and invariably the promise was the elimination of waiting lists, lots of new beds and other facilities. Of course it never happens. The great thing about long term health plans is that they are usually projected 10 years into the future and it becomes difficult for those who have witnessed the failure of all the other ones for various reasons, to criticize it because we are told this time it is different and we are serious.

What all these election & political promises going back umpteen years are, are just empty promises to keep people onboard and keep the given parties in power and it seems that we've been fooled again and again. Maybe it is because there is a continuous conveyor belt of new (young) people every 4 or 5 years to the elections and for them these promises seem like great hope and so it is enough to keep the established order continue further.

Nothing will change until the people in mass demand it. It's time to link up all the different health campaigns and realize that everyone has a common aim.

Stand up and be heard....

by Concerned

Mon Apr 07, 2008 22:02

The current healthcare system can only be labelled as completely inadequate when it comes to Cystic Fibrosis care in Ireland. Its so easy for people to turn a blind eye because it doesnt affect them but in this country where some medical research reports a 1 in 29 chance for each of us being a carrier for the Cystic Fibrosis gene, for some families the lack of medical care has become a terrifying reality.

Too often these young people that are dying just become another statistic. Rather than continue to let this happen we need to stand up to our politicians and ask for what is a basic human right and continue to support the fantastic work that is already being done by the tireless campaigners. Continued support to them.

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