Cystic Fibrosis Unit - Will Joe Duffy get it started this time?

Kaaatelyn wrote: »

It's a well known fact that Ireland has the worst care for CF patients, why are you arguing with life expectancies and sarcastic comments? A life expectancy is just an average it's obviously not set in stone and the CFAI main advertising campaign has been that out of all the developed countries people living in Ireland are less likely to live into their 40s and 50s because of the sorry excuse of a health system we have. So no, the OP is not living in "la la land" they are just well aware that if a person with CF left this country for somewhere with better facilities they would have a better chance at fighting the disease.
The contract has been signed and the building is finally going ahead so hopefully by 2012 people living with CF wont hope that they lived in another country and wont be still afraid to go into hospital when they are ill.

Source stating we have the worst care for CF patients? You don't have one: because it's not true.

As it's somewhat important to sort out the economy and the financial sh1thole this country is in, it is NOT acceptable to bail out the pr1ckish, ungrateful developers and multi millionaires, while people young and old are dying prematurely because of lack of services for CF. It is not the fault of the health care providers, but the fat cat's sitting in offices twiddling thumbs presumably. I attended the funeral during the week of one of the nicest, talented, and smartest, people I've known; who could be alive if there had been the proper facilities(proper isolation rooms etc.) available. It makes my blood boil when I even see Harney on the news...

I have Cystic Fibrosis. Every few months this issue comes up and really I'm not expecting much will come of it this time.

Until the start of this summer I was on IV antibiotics every six weeks for a two week course. I was able to get away to the sun for a few weeks and I think that's what really helped me get back on track. Luckily, when I am on IVs, I don't need to be admitted to hospital and I can do them at home myself. This has been the case since I switched from Crumlin to Vincent's earlier this year. For some reason which they never adequately explained, Crumlin always admitted me for at least five days, citing excuses like, oh the home IVs need to be ordered several days in advance, even though I've gone into Vincent's before noon and have started my IVs, at home, by dinner time.

The staff in Vincent's are great, and they really do the best they can on the limited resources they have. While I'm lucky not to be in the predicament that many CF patients are, as in I don't need regular in-patient treatment, I do have Pseudomonas and other infections, someday I will need this unit, and I see people all the time that need it now.

There are posters saying that we don't have the worst facilities in the world, but we definitely don't have adequate ones and I can imagine if they were in my situation they would feel very differently about it. And, as I said, I'm one of the better off people.

I'm not a fan of Liveline, but I do appreciate Joe Duffy because he has highlighted the issue several times on his show, and he is one of the few people keeping this issue in the public domain.

This isn't about the government bailing out the banks, but about them delivering on promises that I've been listening to my entire life. I sincerely hope that this time they will deliver, but I don't have my hopes up.

Just my two cents, for what its worth.

And yes, I do plan on getting out of here when I finish college.

Kaaatelyn wrote: »

"The future looks uncertain for Cystic Fibrosis patients as treatment services and facilities in Ireland remain well below acceptable international standards. "Since Ireland has the highest incidence of Cystic Fibrosis in the world we should be a world leader instead of lagging behind the rest of the world in providing CF care", says Godfrey Fletcher, CEO of the Cystic Fibrosis Association of Ireland....The death rate among people with cystic fibrosis is intrinsically linked to facilities and specialist staff. Ireland displays a very much higher death rate than does England, Wales and Northern Ireland"

That is quoted directly from the Cystic Fibrosis Association of Ireland's website. I'm sure I could find many, many, many more statements to that effect but I'm not bothered going looking for them to prove a point when im not even sure what your point is? Why are you arguing this? Do you just like telling people they are wrong when they obviously feel strongly about a subject or...?

That doesn't say we have the worst care.

I'm sick of all the moaning. YOU ARE WRONG - IRELAND DOES NOT HAVE THE WORST CARE FOR CF PATIENTS.

Now if you can go find me something that says otherwise, fine. But stop talking a load of rubbish.

Is there a moderator here who might moderate this ill-mannered moderator back into his legal discussion corner?

It's the worst example I've seen in a while of a board mod trying to intimidate genuine contributors. Overbearing, boorish and juvenile.

He'd earn himself a holiday from a lot of sites with this kind of childish, bullying.

Bock the Robber wrote: »

Is there a moderator here who might moderate this ill-mannered moderator back into his legal discussion corner?

It's the worst example I've seen in a while of a board mod trying to intimidate genuine contributors. Overbearing, boorish and juvenile.

He'd earn himself a holiday from a lot of sites with this kind of childish, bullying.

This is ridiculous. I made a valid statement and this is a personal attack on me because you do not agree with my position.
To say that I should not be allowed to post (should be banned from) After Hours - essentially an off-topic forum - because I disagree with a poster is ludicrous.

Furthermore, I fail to see what me being a mod of the LD forum has to do with anything. I am not a moderator of this forum, nor did I ever claim to be.

Furthermore the accusation of bullying is way off base and inappropriate. I think if anyone needs a holiday it's you. Read the charter, personal attacks are generally not tolerated in this forum or in any other forum.

whydoibother? wrote: »

To be fair, if people are going to argue so strongly that we have the worst treatment wherever, a source isn't a lot to ask.

What I would argue instead, is that due to Ireland having the highest incidence of CF in the world (Cystic Fibrosis Association website), we need much higher standards of treatment than other places. It needs to be more of a priority here. Everybody with CF suffers, but because there are more sufferers here, it's felt more here. We need to be ahead of the curve on this one, not average.

Level with Northern Ireland would be a good start.

OisinT wrote: »

This still makes no sense. As I said I used caps to be unequivocally clear in my statement, not to shout (in which case I'd probably go for the ol' caps+bold+italic+underline).

I'm sorry I've upset your efeelings with my ebad emanners. :rolleyes:

So go ahead and "rest your case" but this is a ridiculous derailment of the thread by you - my point still stands that Kaaatelyn was completely wrong in stating that Ireland has the worst CF treatment in the world. I stand by my disagreement with that statement and find such statements utterly ridiculous and, quite frankly, rubbish.

If Kaaatelyn meant worst first world treatment then it should have been said originally and I may not have disagreed with that.

Now, I'm finding it very obvious that you have some problem with me and you're just trolling my posts and crying over the fact that I'm a mod in a completely different forum.
A forum where my job is to adjudicate the legal discussion threads where "shouting" isn't usually a problem.

BTW: this thread is about the Joe Duffy show getting the CF unit built. It's a thread in After Hours. If you want to have a completely serious discussion of CF and its life expectancy then there are plenty of other thread on the topic (there is a search box in the upper right).


On a completely side note, my post was 100% directed to Kaaatelyn's post. I didn't even see the person who said their husband is in need of a double lung transplant. This is unfortunate, yes, and I meant no disrespect to that poster. However, the fact still stands that CF patients get infections and in all countries this is a fact and in all countries many CF patients need transplants.

I've wasted enough time on this.

In future, just show a little more respect to people who might not have the energy to stand up to you. As I said, disagree all you want, but don't belittle people and don't shout them down.

It's not a dignified way for a Mod to behave.

Bock the Robber, OisinT, Keep yer hair on.

Back on topic please.

Mushy wrote: »

Yes, nobody can survive CF. The point of the complaining is that people who suffer from CF are lumped into the same ward as everyone else. These include people with various infections. Somebody suffering from CF in this ward, well, they are gonna die. And they are gonna die much earlier than they should, solely because they'd be in a ward full of infected people.

Yes Joe Duffy crowd can be ridiculous, but for something like this, when a CF-specific ward was promised, to allow people suffering from this disease stay in private rooms they need so as not to have to worry about other infections, then fair play to him for bringing this up. So yes, a lot of people are going to think that lumping CF-sufferers into a ward full of terminally ill people can be related to having the worst care in the world.

I have absolutely no disagreement with your point here whatsoever.

I fully understand the point of complaining that people with CF are put in the same ward. But this does happen in other places in the world. Yes, we should have a separate unit for CF, but as many posters have mentioned - there is a LOT of CF in Ireland.

I think generally the Joe Duffy crowd moaning is the extent of what is done. Obviously this time Joe Duffy himself is trying to bring in people to make a difference.

The moaning I was referring to was general moaning about Ireland's care being the worst in the world and the assertion that elsewhere in the world, current patients with CF are living to 50.

Some terminally ill patients are not suffering from infectious diseases also. Everyone should get a private room in the hospital. I pay for private insurance for that reason.
I understand not everyone can have that, but we would need extreme investment to build a hospital to the scale we need to have all CF patients get a private room in a private CF-only hospital.