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

kiwikid

Some of you may have listened to Joe Duffy raise the issue of the people with Cystic Fibrosis in Ireland. CF sufferers get lots of bacterial and viral infections what are standard flora for us and because they are in poor health anyway they find it more difficult than most to fight them off. The HSE has promised a unit where these people can be treated without worry of cross-contamination from other sick people. that promise came years ago. Still today most people with CF must share deadly conditions in adult shared wards. Joe Duffy (aka the Whine line )has given people with CF a platform to explain why they need the HSE promise of an adult segregated unit (private rooms so they don't pick up bacterial infections when they are not at their best of health), and to fairly well beg the ministers for health and finance to make this promise a reality

So what do you think? Will Joe Duffy get it started this time? the deadline is next Friday. Listen today at 1.45 and see what you think.

Dravokivich

kiwikid wrote: »

The HSE has promised a unit where these people can be treated without worry of cross-contamination from other sick people. that promise came years ago. Still today most people with CF must share deadly conditions in adult shared wards.

Unfortunately there's no money for it now, as with a lot of things health care related. There's been quite a few specialist wards / treatment facilities closed down due to the lack of avail funding.

gazzer

I was listening to Joe Duffy the last couple of days and I was astounded at how bad it is for CF suferers here. That guy who was on yesterday who said he had to tell his son he was dying was just heartbreaking.

I notice though that Joe ignored the various requests by callers to get Mary Harney on air.

UpCork

It's not often I say this about Liveline but the last few shows have been compelling listening. The stories of the people suffering with Cystic Fibrosis are awful.

It must be dreadful when you have this disease to know that everytime you get a set back and need to go into hosptial you are putting your life in jeopardy. Alot of the sufferers on air the other day, just seem to have lost hope.

So sad. It's a disagrace.

SeaFields

gazzer wrote: »

I notice though that Joe ignored the various requests by callers to get Mary Harney on air.

That was so obvious it was infuriating. What its we expect tho...its RTE, the state fianna fail broadcaster.

Absolutely brutal hearing some of those stories. Shame on you Harney, shame on you. :mad:

orourkeda

If they couldn't build it during the boom then they won't build it now.

kiwikid

People are dying in the hospital and the best thing Irish people with CF can do is leave and try find a country to accept and help them live a normal life.

orourkeda

This is probably one of the most depressing pieces of radio I've heard in quite some time. The government are prepared to let their only people die.

We can dress it up whatever way we like but that's the way it is.

FreudianSlippers

I'm getting pretty sick of hearing about it TBH. They have no valid information, just a bunch of people saying they heard something from someone that they might start construction next week. :rolleyes:

Lux23

Its really sad especially as its such a common illness in Ireland.

kiwikid

OisinT wrote: »

I'm getting pretty sick of hearing about it TBH. They have no valid information, just a bunch of people saying they heard something from someone that they might start construction next week. :rolleyes:

I'm sure people with CF would say "pity about you", they need to keep it on the agenda.

FreudianSlippers

God can we get this idiot off the radio talking about counting bats and smelling the coffee. He has no clue what he's on about.

FreudianSlippers

kiwikid wrote: »

People are dying in the hospital and the best thing Irish people with CF can do is leave and try find a country to accept and help them live a normal life.

Yes, because other counties have a cure for CF and they also have magical ways of growing money on trees!

You are living in lala land methinks.

kiwikid

actually im not - Ireland has the lowest life expectancy in the world. If you live in the UK or northern Ireland you can live on average 10 years more.

If you live in the US and / or Canada you can reasonable expect to live into your forties and well beyond.

hows that for la la land then?

FreudianSlippers

kiwikid wrote: »

actually im not - Ireland has the lowest life expectancy in the world. If you live in the UK or northern Ireland you can live on average 10 years more.

If you live in the US and / or Canada you can reasonable expect to live into your forties and well beyond.

hows that for la la land then?

Still wrong according to the CF Foundation:
In the United States, the life expectancy for infants born in 2008 with CF is 37.4 years. Those born in 1982 can expect to live to approximately 24 in North America.

The average age of death in the UK is 35, 10 years ago it was 18 and 10 years before that it was 14.

It also depends heavily on the mutation of the disease. ΔF508 is the most common and the oldest (50,000+ years) and it is totally unknown how such a lethal disease has not been bred out of humanity in such time. So certainly some people can live longer than others, but these are the exceptions rather than the rule.

papajimsmooth

Alot of the increased life expectancy in America etc. is to do with warmer, dryer weather in other countries as opposed to worse treatment.

kiwikid

There are other approaches to treatments in countries other than Ireland.

And there are better facilities in the aforementioned countries - for a CF patient a single room can manage cross contamination better than sharing 6 bed wards with people with pneumonia, something which alas is common in St. Vincents hospital. That is what the people are looking for.

Do you think the care is adequate in Ireland so? or are you of the "whats the point getting better facilities / moving country because if you have it yer gonna die anyway"

"Data supplied by the Irish Cystic Fibrosis Registry reveals very high infection rates among CF patients with a bacteria called Pseudomonas aeruginosa. Patients with a chronic Pseudomonas infection have a 2.6 times higher risk of death. In Dublin hospitals, CF patients have a chronic Pseudomonas infection rate of 67% in the adult units and 31% in the children’s units. Yet in Leeds hospitals it is 53% for adults and 3.9% for children. In Denmark no child under 14 has had a chronic infection of Pseudomonas since 1990"

ScumLord

orourkeda wrote: »

If they wouldn't build it during the boom then they can't build it now.

is more appropriate. Bailing out the banks is disgusting while children are needlessly dying. When I heard the life expectancy here is 21 and 47 in Canada I almost got sick on the spot.

up for anything

I had an Irish friend married to a English man in the UK and they had two children with CF. They really wanted to come home to Ireland to live but wouldn't while their children lived because the facilities for CF sufferers are so appalling here.

iguana

kiwikid wrote: »

for a CF patient a single room can manage cross contamination better than sharing 6 bed wards with people with pneumonia, something which alas is common in St. Vincents hospital.

Is that really happening here? At the start of the year (while we were still living in London) my husband had liver and kidney failure, throughout his entire stay in hospital he was in a private room, with private toilet and shower facilities. He had this while he was in a normal ward, the ICU and in the Renal unit, all in a NHS hospital.

Why? Because one of his symptoms was vomiting and diarrhea and the hospital wouldn't take a chance that he could infect anyone else so he was kept apart from other patients. This is despite the fact that vomiting and diarrhea are common side effects of kidney failure and as such not likely to be contagious. But the doctors/nurses were just not willing to take the tiny risk that he may also have had an infectious bug which could hurt another patient and more importantly had the means to keep him in a separate area.

It's sickening that our nearest neighbour is set up so they can avoid taking small risks, just in case, while our health system is still taking significant risks with highly vulnerable patients. I saw the picture of the man hugging his son who died from the infection he picked up in hospital on the front of the Herald and nearly started crying in the middle of Tescos. Our country really is so very badly run.

Police Chief Wiggum

maybe niall melon and all the holidaymakers helpers in south africa might turn their attention to building the unit....
:P

AckwelFoley

Ive heard and read alot about out "3rd world" health service.

I was in Mullingar hospital last week and tullamore a few months ago.. nothing 3rd world about them, actually they are incredible facitlities.

See, the problrm is budgets.. Literally, you could take out entire budget, forget about social welfare agriculture, educations and spend the lot of it on health care and probably still not reach the level of service in healthcare we would like, its very sad to see people suffer with CF, but the money is not there...

cats.life

kiwikid wrote: »

People are dying in the hospital and the best thing Irish people with CF can do is leave and try find a country to accept and help them live a normal life.

there was a woman who lived in france and (she is aged 40's i think )if she lived here at home she wouldnt be chatten to joe duffy today.

Hoping

My husband has Cystic Fibrosis. In March 2008 he attended an OPD appointment in St. Vincent’s Hospital and was told that his lung function had dropped slightly so they wanted him to come in for two weeks for a course of IVs.

He was reluctant to go in with the risk of cross infection etc, but the doctors assured him that this was the best course of action, as CF patients are supposed to do better in hospital where they can get physio etc. Eventually he agreed to go in and get the infection sorted. He was admitted to a 6 bed ward, with two other CFs and 3 non CF patients.

After a week of being in there, he had really improved. The physio joked that he was fitter that she was and she was finding it hard to keep up with him when walking about! Then a patient (non CF) came into his ward from A&E, that night that patient started to cough a lot. The next morning my husband told the Dr. that he was concerned that this patient had something infectious. The Dr. told my husband in no uncertain terms that that patient had nothing that he could catch.

The next day my husband’s throat began to get a bit sore and his temperature spiked, they gave him paracetamol but the temperature continued to climb. It turned out that he had the ‘flu and a very bad strain of it (some form of type A Influenza)

He and the other two CF patients had caught it from the patient who came in from A&E. He ended up spending 8 weeks in hospital when it should have been a 2 week stay. His lung function dropped dramatically afterwards and it has never recovered. From that day I have watched my husband struggle. He went from being relatively healthy to a shell of himself. I knew transplant was going to be the only option soon.

He was referred to the Freeman hospital in Newcastle in July 2009 to be assessed for a lung transplant. The team in Newcastle agreed that he needed a transplant, but that they would have to come up with a cocktail of antibiotics to treat him with post-transplant. If they couldn’t get something together he wouldn’t be accepted for transplant. We had an agonising 11 week wait, to see if they could come up with the right cocktail for him. In October 2009 he got a call to say that they had the right combination for him and he was now on the active list. To say we were relieved is the biggest understatement ever! I never thought I’d be so happy to see my husband on an organ donor waiting list!!! They advised him to keep as healthy and active as possible and it was imperative that he maintained a healthy BMI.

In February 2010, he had a bad infection and had to go into St. Vincent’s for IVs. Again he was admitted onto a 6 bedded ward. After a physio session, he went into a bathroom on the ward to wash his hands only to find the place covered in faeces. He quickly left and reported the mess to a nurse.

Thirty six hours later he began to feel quite unwell, he stared to vomit and have bad diarrhoea. He was told the he had the winter vomiting bug. Obviously not ideal, but we were thankful that this was all he had caught i.e. not something that would affect his chest. When an inpatient has diarrhoea a sample is sent to the lab for testing. Two days later my husband was told that he didn’t have the winter vomiting bug, it was in fact Clostridium Difficile (C diff). The team in Newcastle had to be informed and they said that they couldn’t transplant him while he had this and he would be taken off the list completely if it didn’t clear up. Thankfully it did clear up, but for those 2 months that he was suspended from the list were a living hell and all because of cross infection. We will never know if during those 2 months if a pair of suitable lungs came up for him

Out of the other two CFs who caught that ‘flu with my husband, one is dead and thankfully the other has received a transplant. My husband is on a knife edge and the outcome can only go one of two ways for him.

We are under no illusion what CF means and I never expected my husband to live to see old age.

But the fact of the matter is regardless of gene mutation or anything else, because he caught that ‘flu in St. Vincent’s hospital his life has been shortened, by God knows how many years.

Unless my husband gets a transplant soon, he will be dead in a year and Mary Harney will have his blood on her hands.

Superbus

Hoping wrote: »

My husband has Cystic Fibrosis. In March 2008 he attended an OPD appointment in St. Vincent’s Hospital and was told that his lung function had dropped slightly so they wanted him to come in for two weeks for a course of IVs.

He was reluctant to go in with the risk of cross infection etc, but the doctors assured him that this was the best course of action, as CF patients are supposed to do better in hospital where they can get physio etc. Eventually he agreed to go in and get the infection sorted. He was admitted to a 6 bed ward, with two other CFs and 3 non CF patients.

After a week of being in there, he had really improved. The physio joked that he was fitter that she was and she was finding it hard to keep up with him when walking about! Then a patient (non CF) came into his ward from A&E, that night that patient started to cough a lot. The next morning my husband told the Dr. that he was concerned that this patient had something infectious. The Dr. told my husband in no uncertain terms that that patient had nothing that he could catch.

The next day my husband’s throat began to get a bit sore and his temperature spiked, they gave him paracetamol but the temperature continued to climb. It turned out that he had the ‘flu and a very bad strain of it (some form of type A Influenza)

He and the other two CF patients had caught it from the patient who came in from A&E. He ended up spending 8 weeks in hospital when it should have been a 2 week stay. His lung function dropped dramatically afterwards and it has never recovered. From that day I have watched my husband struggle. He went from being relatively healthy to a shell of himself. I new transplant was going to be the only option soon.

He was referred to the Freeman hospital in Newcastle in July 2009 to be assessed for a lung transplant. The team in Newcastle agreed that he needed a transplant, but that they would have to come up with a cocktail of antibiotics to treat him with post-transplant. If they couldn’t get something together he wouldn’t be accepted for transplant. We had an agonising 11 week wait, to see if they could come up with the right cocktail for him. In October 2009 he got a call to say that they had the right combination for him and he was now on the active list. To say we were relieved is the biggest understatement ever! I never thought I’d be so happy to see my husband on an organ donor waiting list!!! They advised him to keep as healthy and active as possible and it was imperative that he maintained a healthy BMI.

In February 2010, he had a bad infection and had to go into St. Vincent’s for IVs. Again he was admitted onto a 6 bedded ward. After a physio session, he went into a bathroom on the ward to wash his hands only to find the place covered in faeces. He quickly left and reported the mess to a nurse.

Thirty six hours later he began to feel quite unwell, he stared to vomit and have bad diarrhoea. He was told the he had the winter vomiting bug. Obviously not ideal, but we were thankful that this was all he had caught i.e. not something that would affect his chest. When an inpatient has diarrhoea a sample is sent to the lab for testing. Two days later my husband was told that he didn’t have the winter vomiting bug, it was in fact Clostridium Difficile (C diff). The team in Newcastle had to be informed and they said that they couldn’t transplant him while he had this and he would be taken off the list completely if it didn’t clear up. Thankfully it did clear up, but for those 2 months that he was suspended from the list were a living hell and all because of cross infection. We will never know if during those 2 months if a pair of suitable lungs came up for him

Out of the other two CFs who caught that ‘flu with my husband, one is dead and thankfully the other has received a transplant. My husband is on a knife edge and the outcome can only go one of two ways for him.

We are under no illusion what CF means and I never expected my husband to live to see old age.

But the fact of the matter is regardless of gene mutation or anything else, because he caught that ‘flu in St. Vincent’s hospital his life has been shortened, by God knows how many years.

Unless my husband gets a transplant soon, he will be dead in a year and Mary Harney will have his blood on her hands.

Brilliant, brilliant, brilliant post.

Thank you so much for sharing that. Truly an indictment on Ireland as a country.

galwayrush

The pensions and golden handshakes and expenses handed out to various quangos,waste at FAS,TD's unnecessary and often fraudulent expenses, double pensions , pensions on top of inflated salaries for members of the Dail... that money would go a long way in providing the necessary care.

Of course geting rid of a lot of waste in the HSE would probably do it 10 times over.

bleg

gazzer wrote: »

I notice though that Joe ignored the various requests by callers to get Mary Harney on air.

She usually doesn't do live interviews. The Frontline this year being a notable exception. I think the woman is useless as Minister for Health but she's probably the best spindoctor in the business. Her PR people (whom are probably employed at the expense of the state) are very good.

Mint Sauce

was listening to some of joe duffy in the week, never before have i been so upset, shocked and disgusted listening to a radio show.

i appreciate that we may not have the money, but mary harney and this excuss of a goverment are playing with peoples lifes, during the boom instead of putting in essential services money was being wasted left right and centre. those in charge only care about them selves.

the story of the man telling his son that he might die would have brought tears to even the hardest of hearts.

Hoping

By not having CFs in their own rooms is costing the health service money. If they were segregated, they wouldn't be catching things from other people which in turn leads to longer stays, more drugs, more physio, more lab work, more x-rays etc.

So it's not ony affecting the CF community as it has a knock on effect for other people waiting on beds.

SEPT 23 1989

Imagine in a land far far away a health board wanted a construction company to build a CF unit,own it,and then rent it back to the health board

Kaaatelyn

OisinT wrote: »

Yes, because other counties have a cure for CF and they also have magical ways of growing money on trees!

You are living in lala land methinks.

OisinT wrote: »

Still wrong according to the CF Foundation:
In the United States, the life expectancy for infants born in 2008 with CF is 37.4 years. Those born in 1982 can expect to live to approximately 24 in North America.

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.

FreudianSlippers

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.

Seaneh

I spent over a month in a neurology ward last year and all while I was there, there was a girl who suffers from CF there too.
She had no need to be in a neurology ward, they just couldn't put her anywhere else because of the risk of infection (where as, in the neurology ward the risk was a lot lower, obviously). If there was somewhere for her to go there would have been another bed free from someone who had an actual need to specialised neurological care. It was a total waste of a resource.

clikityclak

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...

Biggins

Hoping wrote: »

My husband has Cystic Fibrosis. In March 2008 he attended an OPD appointment in St. Vincent’s Hospital and was told that his lung function had dropped slightly so they wanted him to come in for two weeks for a course of IVs...

Dear Hoping, there is nothing I can say to that post except that I can totally understand where your coming from, what your up against and what you seek.
Its not perks or bonuses, not even medical care that is far out of the reach of what we are capable of doing in this country. Its just basic standard life saving care your looking for.

I can only offer my deepest sympathy at this time for the bind you have been placed in and hope somehow your loved one gets help he needs.
I know what it is like to sometimes feel helpless, like your in a hole, your shouting and no one is hearing you. They that have the power in their hand to effect change, are just passing you by.

Its a shame on them, a disgrace - and you do your husband/family proud for not giving up and just lying down and taking it.
Keep fighting the good fight and I know everyone of any decency here on boards.ie irrespective of how we view our current monetary situation, wish you and your husband all the best for the future.

Biggins.

Dj Stiggie

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

OisinT wrote: »

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

"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...?

FreudianSlippers

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.

Kaaatelyn

OisinT wrote: »

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.

You obviously arn't involved with cystic fibrosis in anyway or else you'd never be rude enough to say you're "sick of all the moaning". So I don't really think you have an opinion on it. Not one that anybody would value anyway.


"Ireland has the highest incidence of CF per head of population in the world, and the most aggressive strain of it. We should be leading the way in cystic fibrosis healthcare, Orla stressed, but we’re very much not. In fact, the average life expectancy for a person with CF in Ireland is the lowest in a first world country. Ireland has the worst resources for CF patients in Europe, with people just across the border in Northern Ireland faring much better."

there's another quote for you where it CLEARY says that we have the lowest life expectancy out of all the first world countries and also have the worst resources in Europe. I said previously that we have the worst healthcare in developed countries, I very obviously wasn't including places like Africa etc in that. So stop making me out to be a complete idiot and don't you dare accuse me of talking "complete rubbish".

Biggins

Just sources for the quote below. I can't comment on how good/bad is CF care because of personal lack of knowledge.

Kaaatelyn wrote: »

..."Ireland has the highest incidence of CF per head of population in the world, and the most aggressive strain of it. We should be leading the way in cystic fibrosis healthcare, Orla stressed, but we’re very much not. In fact, the average life expectancy for a person with CF in Ireland is the lowest in a first world country. Ireland has the worst resources for CF patients in Europe, with people just across the border in Northern Ireland faring much better."...

Sources:

* http://runningforcf.ie/about-cystic-fibrosis/

* http://www.limerickindependent.com/local-news/local-news/major-fundraising-campaign-launched-by-cystic-fibrosis/

* http://www.irishhealth.com/article.html?id=15337

Powerpoint Data
* http://www.google.ie/url?sa=t&source=web&cd=4&ved=0CB0QFjAD&url=http%3A%2F%2Fwww.soroptimist-int-roi.com%2F65_roses.ppt&rct=j&q=Ireland%20has%20the%20highest%20incidence%20of%20CF%20per%20head%20of%20population%20in%20the%20world&ei=J4u8TKXUHKKQ4gaa5uTFDg&usg=AFQjCNGACaPP5CuJKUelslX1RNsTQRnuvQ&cad=rja

Moojuice

OisinT wrote: »

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.

We do. Fact. If you know anyone with CF or are involved in the campaign you will know this. The facilities, when accessible are very good as are the staff. Access and isolated wards are the problem. You have to sit in A&E to be admitted, this is risky for people with CF, then once they are in you are put on a ward with very ill people who more than likely will pass on any infection they may have. You may even be in a room with someone else who has CF, which is extremely dangerous. Going into hospital with CF in Ireland is extremely risky, where death is a very possible outcome. How on earth in this day and age is that acceptable?

Your comments are ignorant and very insulting. Moaning? Oh sorry, I guess people with CF should shut up and take it, die early and be happy with it. They are fighting for a basic unit that would save the state money in the long run. Ireland has the lowest life expectancy for people with CF in Europe.

If you are being pedantic in comparing Ireland to, say, India, then you are an a**hole. The fact is, Ireland has one of the highest rates of CF in the world, with a particularly vicious mutation being the most prevalent. As a modern, western economy, the states treatment of people with CF is despicable and horrific.

Harney and the heads of the HSE are criminally negligent: people are dying through their inaction, contempt and failure to act. A tiny fraction of what is going in to Anglo to bail out FF supporters would build a WORLD CLASS facility.

Kaaatelyn

Moojuice wrote: »

We do. Fact. If you know anyone with CF or are involved in the campaign you will know this. The facilities, when accessible are very good as are the staff. Access and isolated wards are the problem. You have to sit in A&E to be admitted, this is risky for people with CF, then once they are in you are put on a ward with very ill people who more than likely will pass on any infection they may have. You may even be in a room with someone else who has CF, which is extremely dangerous. Going into hospital with CF in Ireland is extremely risky, where death is a very possible outcome. How on earth in this day and age is that acceptable?

Your comments are ignorant and very insulting. Moaning? Oh sorry, I guess people with CF should shut up and take it, die early and be happy with it. They are fighting for a basic unit that would save the state money in the long run. Ireland has the lowest life expectancy for people with CF in Europe.

If you are being pedantic in comparing Ireland to, say, India, then you are an a**hole. The fact is, Ireland has one of the highest rates of CF in the world, with a particularly vicious mutation being the most prevalent. As a modern, western economy, the states treatment of people with CF is despicable and horrific.

Harney and the heads of the HSE are criminally negligent: people are dying through their inaction, contempt and failure to act. A tiny fraction of what is going in to Anglo to bail out FF supporters would build a WORLD CLASS facility.

+100000

Thanks, couldn't have put it better myself.

FreudianSlippers

Kaaatelyn wrote: »

You obviously arn't involved with cystic fibrosis in anyway or else you'd never be rude enough to say you're "sick of all the moaning". So I don't really think you have an opinion on it. Not one that anybody would value anyway.


"Ireland has the highest incidence of CF per head of population in the world, and the most aggressive strain of it. We should be leading the way in cystic fibrosis healthcare, Orla stressed, but we’re very much not. In fact, the average life expectancy for a person with CF in Ireland is the lowest in a first world country. Ireland has the worst resources for CF patients in Europe, with people just across the border in Northern Ireland faring much better."

there's another quote for you where it CLEARY says that we have the lowest life expectancy out of all the first world countries and also have the worst resources in Europe. I said previously that we have the worst healthcare in developed countries, I very obviously wasn't including places like Africa etc in that. So stop making me out to be a complete idiot and don't you dare accuse me of talking "complete rubbish".

oh, so now it's "the lowest in a first world country." is it? :rolleyes:

Make up your mind.

1squidge

My neice has CF and went into hospital for iv treatment a couple of years ago and ended up catching mrsa. She will now only go into hospital if its really necessary as her mother gives her the iv treatment at home. Yes we do have the worst cf care in the western world and no fianna fail apologist will change that fact. I think the best people to ask are the sufferers themselves as they are the ones who have to use our second rate facilities and catch horrible bugs like mrsa.

Moojuice

OisinT wrote: »

oh, so now it's "the lowest in a first world country." is it? :rolleyes:

Make up your mind.

What are you hoping to achieve by berating posters who are drawing attention to the dismal conditions suffered by people with CF? Does it give you a kick or a feeling of superiority? You have contributed very little to the debate other than to troll other posters. You made one relevant and interesting post, can you not keep doing that or are you just going to insult people?

Bock the Robber

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.

FreudianSlippers

Moojuice wrote: »

What are you hoping to achieve by berating posters who are drawing attention to the dismal conditions suffered by people with CF? Does it give you a kick or a feeling of superiority? You have contributed very little to the debate other than to troll other posters. You made one relevant and interesting post, can you not keep doing that or are you just going to insult people?

All I said was that the claim that Ireland has the worst CF treatment in the world is wrong. (which it is).

If people really believe they can live out full lives in other countries then that is their prerogative to believe that, but the facts and the figures show that while Ireland's CF survival rate is low compared to other first world countries, it is not significantly lower. The claim that people are living to 50 in other countries is based on estimation of life expectancies of those born in the past 5 years.

And yes, I have a great feeling of superiority when people grasp at straws to defend a position which is wrong: eg that Ireland has the worst life expectancy for CF patients in the world. Then they change it to first world when called out on the inaccuracy.

FreudianSlippers

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.

Bock the Robber

OisinT wrote: »

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.

Really?

How about this?

"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."

Shouting and belittling others' contributions.

There are no personal attacks in what I said, only criticism of your behaviour, so don't wave your charter at me, and while you're at it, please don't try to put words in my mouth. I didn't say you should be banned. I said you'd be given a holiday on other sites.

You're trolling your own board and it's a disgrace.

Show some respect for people who are trying to put a genuinely-held point of view. Disagree with them if you wish, but don't tel them they're talking rubbish. That's both aggressive and disrespectful.

whydoibother?

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.

FreudianSlippers

Bock the Robber wrote: »

Really?

How about this?

"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."

Shouting and belittling others' contributions.

There are no personal attacks in what I said, only criticism of your behaviour, so don't wave your charter at me, and while you're at it, please don't try to put words in my mouth. I didn't say you should be banned. I said you'd be given a holiday on other sites.

You're trolling your own board and it's a disgrace.

Show some respect for people who are trying to put a genuinely-held point of view. Disagree with them if you wish, but don't tel them they're talking rubbish. That's both aggressive and disrespectful.

How exactly does one shout online?

I posted in caps to say things in the clearest way possible since it was obviously ignored or misunderstood in my previous posts.

Don't try to play coy word games with me btw. What does "given a holiday" mean if not banned?

I made a post to the individual poster in question who was talking rubbish: saying that the care of CF patients in Ireland is the worst IN THE WORLD.

I am sick of all the moaning - it's all people do. The Joe Duffy crowd is ridiculous and CF is a disease which one cannot survive. Full shop.
To claim that Ireland has the worst care in the world is plain incorrect.

Finally as I said in my previous post I am not a moderator of After Hours. So not only am I not trolling for the aforesaid reasons, but if I was trolling it would not be of my own board.