It's time for a cystic fibrosis unit

[St Disibod]

Some time ago an article by one Orla Tinsley caught my eye in The Irish Times. It's impact on me was sufficient that I quoted it twice on Politics.ie already (see Private Hospital suspends cancer care and Sicko- the new Michael Moore Film:

[quote=St Disibod]Orla Tinsley* has experienced public healthcare in Ireland though. She suffers from cystic fibrosis, and please anyone correct me if I am mistaken, but once you have been diagnosed with this disease no private health insurance company will touch you with a barge pole. Owing to a hereditary disease, you must rely on public healthcare. This is what she wrote in the Irish Times, 22nd May 2007, page 16:

They might not be aware that elderly, senile patients are forced to share rooms with CF patients in a way that poses a threat to us both. In this environment, I have to get used to being cursed at continually.

My crimes include opening windows, running taps and pulling my curtain to change in privacy. I have laughed nervously as psychiatric patients have sat on my bed trying to convince me that the world was going to explode. I have met people who have wandered into the six-bed room where I sleep and attempted to convince me they could heal me if I only let them touch my arm.

I've seen beautifully glamorous elderly ladies urinate on the floor through no fault of their own. I've maintained my composure as other friends with CF are attacked by elderly people or family members for being too loud or for having the gall to have the window open.

Sleep is not possible at night and with breakfast at 7am, cleaners at 8am and a barrage of doctors, blood-tests, physio and medical students to occupy, it's not possible in the day. iPods are a handy way to try and escape unless they go for a walk, like mine did the last time I was there. That theft, along with nine consecutive sleepless nights, instigated my decision to leave.

Checking myself out had fortuitous consequences - a much sicker friend, who had been in a different six-bed room, was moved into a cubicle. A week later I found out that my friend had passed away. I took a small comfort that her last few days were in the privacy of that room with her family, and not with five other people and theirs.

I have often observed old and young people dying in the room I sleep in. The unspoken rule is, if you can walk out, you leave or if you can't, you put on your headphones and pretend. You pretend you cannot see the silhouettes through the curtains, bending down to give one last kiss. You pretend that you do not feel guilty for being there, guilty about your hacking coughs which interrupt their final moments.

*- Just to provide the background information, Orla Tinsley is 20. The average life expectancy for a person with cystic fibrosis in Ireland is 21. In Northern Ireland it's 33. In Britain it's longer again, reaching up to late 40s in the US.[/quote:1r8948f4]
In both cases I used this quotation to highlight the poor standard of public healthcare in Ireland in relation to private healthcare, and I think the article does a very good job of bringing attention to the inequity that government policy is trying to root further into the system. However, Ms Tinsley was driving at a very different point, and one she returned to in a new article in today's Irish Times:

Just before Christmas my friend asked me if I could have anything in the universe for Christmas, what would it be? I said Johnny Depp and a chocolate fountain, because I didn't want to say what I really wanted, it was too depressing, writes Orla Tinsley .

What I would have given up my next few Christmas presents for was a cystic fibrosis unit. It sounds like such drivel, but I have never wanted anything more.

On St Stephen's Day, 2007, a girl I didn't know called Tammy died. On December 29th, 2007, a girl I did know called Barbara died from the same condition, cystic fibrosis, a disease affectionately referred to as "the swine" by Barbara. Tammy was 18 and Barbara 24.

Cystic fibrosis is a genetic disease that causes respiratory and digestive problems, osteoporosis, diabetes and other complications.

It's a multi-organ disease and in Ireland there is a 1 in 200 chance that two people who have the gene will have a child with cystic fibrosis. We have the highest incidence in the world and I was one of those figures. I am 20 now and one of over 1,100 people in Ireland living with it.

At the end of November another girl I knew called Tracie died aged 24 from the disease. Her death got one column "Tracie feared if care would kill her" in a newspaper.

[...]

I also thought about my dear friend, sports enthusiast and all round charmer Damien who passed away last year and for my magazine editor, scientist and encyclopedia of knowledge-friend Jean, who passed away last March. I only got to two funerals, and that's just 2007 and just the people I knew of.

Progress has been made on the issue, meetings are being held, talks are ongoing, but we don't need to hear about meetings and conversations. We need a public commitment, a promise that we will have our dedicated unit, and we need it now. As the public mourned Katy French and the lens on cocaine in Ireland started to get focused, I thought wildly that maybe if I got engaged and broke up with a slightly well-known person, did some lingerie modelling and then died, if I fought off my illness long enough, maybe something would be done. Maybe the Taoiseach's aide-de-camp would come to a cystic fibrosis funeral and see something he would remember, something that he might report back. He might see friends and family congregate, he might hear Leonard Cohen's Alleluia or Tina Turner's Proud Mary, funeral songs chosen sometimes years before the funeral took place.

He might see some lucky transplant recipients hovering outside the church waving and mouthing words from a distance to their still suffering friends, that they can't mix with anymore for medical reasons.

[...]

I feel very much alive and now I would like the buzz of knowing that the next infection I get might not kill me; that I could have my own room in hospital instead of risking infection from everyone from psychiatric patients to those with broken limbs and common colds.

I would like the buzz that can only come from decreasing our mortality rate from cystic fibrosis which is drastically ahead of Northern Ireland, Britain and the US, in this, the country with the highest instance of the disease in the world.

With cystic fibrosis I cannot choose when to take drugs, shoot up some insulin and I cannot change my fate. But my life and that of my friends can be prolonged. I can also prolong the time I spend out of hospital by ensuring my time in there is well spent.

It is simple: We need a dedicated cystic fibrosis unit with fully-trained staff who are knowledgeable about the disease, not a bed where a nurse tells you that your cough is strange; that you're too young to be on so many drugs and with whom you have to argue for an hour before you get the particular drug you need.

We need our own isolation rooms with en suites so that we can get over whatever infection we have caught, whether that takes us two weeks, three weeks or two months.

We need to know that we do not have to worry about the person with MRSA in the other room infecting us by using our toilet, that we do not have to worry about being heckled for opening the window or being moaned at for vomiting after an operation. We deserve freedom from infection and from the poor, confused woman who you constantly have to guide back to her bed because there is nobody else there to do it.

We need somewhere you do not have to endure someone else's blood on a tray containing intravenous drugs.

Cystic fibrosis will eventually defeat me but there is no way it is happening yet.

A degree, some travelling, maybe falling in love would be nice first. Or maybe I will become a lingerie model. The possibilities are endless if only the means were there.

I don't think there is much further to say on that: she said it well enough herself. I'd just add a "here! here!", and perhaps a few of us might agitate a bit on the issue when there's a political ear available, even if it is just some random representative that calls to the door.

[ManFromDelMonte]

Thanks for highlighting that. I missed both those articles.
My brother who is 33 suffers from the disease. The thoughts expressed in those articles are depressingly familiar.

[johnfás]

This was one of the election promises wasn't it? Hopefully it will be implemented sooner rather than later... It is idiotic that we don't have such units in Ireland, a little known fact to many might be that we have the highest level of Cystic Fibrosis in the World.

I know a young and bright teenaged girl who has CF, she has recently had a lung transplant in the UK. Thankfully this life saving operation has recently become available in Irish hospitals so that others will not have to endure the dreadful commute that she did whilst also at death's door.

[ManFromDelMonte]

We actually have the highest incidence of the disease in the entire world. 2 reasons for that: us being an island nation with a historical penchant for breeding with our neighbours, and also CF is disease which is particular only to white people.

CF unit never featured as a government election promise, though it was one of the points enda tried to raise in the TV debate.

The thing that pisses me off about it is the disparity between the life expectancy north and south. That and the fact that it is an absolutely horrible disease.

My bro has had heart & lung and a Kidney transplant as a result of it as well as all the other sh*t it throws at you.

[geraghd]

That and isolation rooms for serious communicable diseases. But sure its not like the health service and successive ministers have been aware of the issue for the last decade or so..

[coc]

It was time 30 years ago. These people are left to die while the Celitc Tiger roars on without them. Won't be long now before qtman comes along to explain why none of this is the HSE's fault and why colocation will fix it.

[Genuine Rep]

Can anyone advise what is government policy in regard to the provision of a dedicated CF unit?
Do they intend to provide a unit?
If they do at what stage in the provision process are we presently and what is the projected date of actual opening of a unit?
Factual knowledge and answers to these question rather than waffle or political point scoring would be appreciated.

[Genuine Rep]

Can anyone advise what is government policy in regard to the provision of a dedicated CF unit?
Do they intend to provide a unit?
If they do at what stage in the provision process are we presently and what is the projected date of actual opening of a unit?
Factual knowledge and answers to these question rather than waffle or political point scoring would be appreciated.

Anyone?

[DOD]

This would be long overdue. A close childhood friend of mine died of CF at 14, this is a terrible illness which kills people very young.

[johnfás]

This would be long overdue. A close childhood friend of mine died of CF at 14, this is a terrible illness which kills people very young.

And beyond that, kills them here about 15 years earlier than it does if you live North of the Border.