Trading people's lives for economic survival is sick and heartless

 

OPINION:The HSE has effectively told us that it was just pretending CF patients mattered, writes ORLA TINSLEY

THE 30-bed dedicated cystic fibrosis unit that Brendan Drumm promised in January 2008 would be available by 2010 is not happening. The news that the funding will not be available until 2011 is heartbreaking. As CF patients we should have seen it coming.

Eight single en suite rooms were made available at St Vincent’s hospital in August 2008, and that gave us hope. On Wednesday I sat beside the lake in UCD holding on to my friend. I had just gotten a text message to say that a close friend with cystic fibrosis had died. All we could do was leave the library and go outside and breathe in the cold, fresh air.

That was the second person I knew with cystic fibrosis who died in the past three weeks, and there are at least two others that weren’t friends of mine.

Yes there is a recession and we are all struggling, but trading people’s lives for survival is sick and heartless. It is heartbreaking to think that we will not have our unit by 2010. The declaration that the facilities for cystic fibrosis patients in Ireland were in a state of emergency was made my healthcare expert Dr Ronnie Pollock in 2005 so it’s hard to

see why, with the highest instance of cystic fibrosis in the world, Irish patients are treated like insignificant people.

I have only been in a single en suite room once, and, as ridiculous as it sounds, I cried when I walked into it. It is difficult to explain the relief that comes from being able to sleep properly after an intense day of heavy drugs, nebulisers and exhausting physiotherapy. When so many organs are affected and 60 per cent of your day is spent moving between the bathroom and bed, it’s nice not to have to bring in toilet cleaner to clean up after another person’s congealed faeces or dodge a forgotten dirty nappy.

The fear of invisible infection does not keep you awake at night. You can sleep, eat and use the toilet in a room where you don’t have to be nervous about the screaming person beside you, you don’t have to worry about their visitors bringing in bugs.

It’s a relief to know you’re not going to have to watch someone die in the bed beside you. Apart from all of those things, you know that in that single en suite room, it’s just you and your CF.

So if it takes you four weeks to get better, like it did for me the last time, it’s because that’s what you needed, not because of external circumstance.

There’s enough room around your bed for your team to get to you. There’s oxygen, a suction pump, a blood pressure monitor. If you were really struggling in one of those eight rooms the dedicated staff are there, it’s not some inexperienced person giving you the wrong drugs, telling you that you’re on an awful lot for a 22-year-old and forgetting to come back with your nebuliser.

If something happens in a single en suite room with the dedicated staff around, it’s just you, your CF and pure luck. That is a comforting thing. The reality is that with over 300 people attending the national referral centre and only eight single en suite rooms, some of us have and will pay dearly for spending our time over the years in inhumane conditions that slowly and quietly eat away at us.

The two girls who passed away in the past three weeks were on Joe Duffy’s Liveline programme with me and so many others in January 2008. One of them, Bernadette, wrote a letter to the show about what it was like waiting for a life-saving transplant. There is a sort of heaviness that hits you when you realise that person will never get to finish their final year in college or do what they wanted to do.

The HSE has effectively told us that it was just pretending we mattered last January, that the young people fighting for their lives are just collateral damage.

The 1,135 people with cystic fibrosis in this country, their families and friends cannot and will not accept that.