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

kiwikid · 08-10-2010 12:53PM #1

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 · 08-10-2010 01:12PM

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 · 08-10-2010 01:16PM

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 · 08-10-2010 01:16PM

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 · 08-10-2010 01:21PM

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 · 08-10-2010 01:24PM

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

kiwikid · 08-10-2010 02:10PM

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 · 08-10-2010 02:19PM

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 · 08-10-2010 02:20PM

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 · 08-10-2010 02:24PM

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

kiwikid · 08-10-2010 02:37PM

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 · 08-10-2010 02:37PM

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 · 08-10-2010 02:38PM

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 · 08-10-2010 03:06PM

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 · 08-10-2010 03:12PM

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 · 08-10-2010 03:17PM

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 · 08-10-2010 03:33PM

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 · 08-10-2010 05:17PM

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 · 08-10-2010 05:29PM

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 · 08-10-2010 06:08PM

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 · 08-10-2010 06:41PM

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

AckwelFoley · 08-10-2010 06:50PM

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 · 08-10-2010 07:20PM

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 · 09-10-2010 10:24PM

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 · 09-10-2010 10:35PM

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 · 09-10-2010 10:43PM

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 · 09-10-2010 11:04PM

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 · 09-10-2010 11:43PM

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 · 09-10-2010 11:49PM

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 · 09-10-2010 11:55PM

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 · 17-10-2010 11:03PM

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.

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

Comments