Saturday, March 28, 2009

Frustrated and Angry

*Warning* This is a rant, albeit an important one, but if you have no need for depressing material, then drag the mouse up and hit the little 'X' before you read on.

Where to begin... Facts: Ireland is a wealthy nation (well, until recently anyway). Ireland has the highest rate of Cystic Fibrosis as well as one of the most aggressive forms in the world. And yet, as a patient who became so ill as a result of the disease and a transplant was the only treatment option left, in adult services, I had my own room once. I shared toilets my whole life in hospital with patients who had MRSA, C-Diff as well as other dangerous contagious bugs. I shared six bedded rooms with dying women, with other people with CF (whose infections could have killed me), with ladies who were no longer 'with it' and would take it out on anyone who listened, who may wet their beds or the floor routinely, or as happened me once, came running into my room in a distressed state at 1am in the morning, throwing my medications on the floor. The undignified part was the fact that this woman was wearing nothing from the waist down, but clutching a nappy in her hand and screaming in distress.

No dedicated CF unit exists in the Ireland's specialist centre...or "centre of excellence". When I was patient, they had two single (not en-suite) bedrooms for their CF patients on the respiratory ward.

So 14 months ago, a national radio talk show was taken over by calls from all around the country from people with CF (pwcf), relatives of pwcf, friends of pwcf, and if the whole country didn't know what cystic fibrosis was....they soon learned. People phoned in saying they had seen plans and blueprints from the early 90s for the new unit. Other parents rang in claiming the same thing, sadly their children had since passed on. The show was inundated with offers of donations, of offers to build a unit for free, of offers to put patients into hotels instead. And out of the slimy woodwork, comes the government. They promise to build a unit, that 14 en suite rooms will be provided in the interim and that a unit will be up and running by the end of 2010.

We got eight beds. Fantastic en suite, spacious rooms. For a few hundred patients. At any given time there can be up to 30 inpatients. And now they've gone back on their promise of the other six rooms and of the unit altogether:

I got lucky; I escaped. But Barbara, Damien, Jean, Darragh, Sam, Lyndsay, Ian, Brendan, Mary and Patrick didn't. Three weeks ago, Louise died. Two days ago, Heather. These are all people - and only people who I know, there are so many thousands more. These people put up with 'facilities' and hygiene standards that would have a pig factory closed down.

It makes me so angry that this can be allowed to go on when the politicians are lining their greasy pockets with money, where the people in the HSE are given hundreds of thousands of Euro bonuses. Maybe nobody cares about the most vulnerable when the country is in a state of economic crisis, but they certainly never cared when we were all driving newly registered, over sized, chunky Audi's and Land Rovers either.

It's so very easy to turn the blind eye, but what if it is your child in this situation, your sibling, your neice or nephew, your friend, your partner? What if it's you?