Government reverses CF unit decision

[Posted: Tue 07/04/2009 by Joanne McCarthy www.irishhealth.com]

The Department of Health last night vowed that the proposed cystic fibrosis unit in St Vincent’s Hospital, Dublin, would be operational as early as possible in 2011, following a nationwide campaign by the Cystic Fibrosis Association of Ireland (CFAI) and amid increasing public anger.

In a statement issued last night, the Department of Health said the project would proceed on the basis that payment would be made at the end of the construction phase.

“This is a different way of funding this project as it involves the construction company financing the development up to the final phase of construction,” the statement said. 

The move has been ‘cautiously welcomed’ by the CFAI, who stressed that promises have been made and broken before, and people with CF are living in fear of getting their hopes dashed once more.

While thanking the Health Minister for deciding to commit to the unit, 22-year-old CF campaigner Orla Tinsley said she felt mixed emotions of relief and uncertainty.

Last year, after Orla and other people with CF went public with the state of CF care in Ireland, the Government publicly promised on RTE’s Prime Time that a dedicated CF unit containing 34 single en suite bedrooms would be provided by 2010 in St Vincent’s Hospital. For many, that promise was their key to a happier, healthier, longer life. Construction was to start by the end of 2008. As people with CF and their families well know, that never happened.

Last week, the HSE announced that funding for the CF unit has been postponed until 2011, at the earliest. Their decision was met with a huge amount of anger, disbelief and disappointment among people with CF, their families, and the general public.

“By not being treated with proper facilities, we are exposed to infections from other patients, which can basically kill us. That’s quite frankly what the situation is. They are putting us in life threatening situations,” Orla Tinsley told Irishhealth.com.

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.

Cystic fibrosis is an inherited life-threatening disease that affects the internal organs, especially the lungs and digestive system, by clogging them with thick mucus and making it hard to breathe and digest food.

For people with cystic fibrosis and their families, the news that the unit was to be postponed was heartbreaking. The 34 bed unit would be a life saver for so many. People with CF are prone to recurring damaging lung infections that require frequent hospital visits for treatment, and the potential of being infected by others while in hospital is a major concern. The threat of infection is reduced greatly when a CF patient has a single en suite hospital room.

According to the Cystic Fibrosis Association of Ireland (CFAI), the lack of isolation facilities here to protect from infection is one of the main causes of Irish CF patients dying younger than their UK counterparts.

In 2005, Dr Ron Pollock, a healthcare expert in the UK, did an independent review of the CF services in Ireland, and declared that they were in a state of emergency.

“He said the Government would have to implement proper services for CF patients, which means single en suite rooms immediately. That didn’t happen, and that was in 2005,” said Orla.

At the moment, just eight single en suite bedrooms are designated to people with cystic fibrosis, and according to Orla, they are always full.

“The only way you get into one of those rooms is if you’re extremely unwell, and if someone sicker than you comes in they move you out. It is ridiculous that you have to be at end stage or very unwell to get into one of these rooms. The demand on the staff is crazy because they have to decide who gets the private infection-free space, and who doesn’t,” she said.

Sharing a room with other patients can be terrifying for CF patients, who never know what infections they may be exposed to.

“I’ve shared rooms with people with MRSA. You’re there for three or four days, then the person gets moved out and their curtains get taken down, and you realise that person had something that you shouldn’t have been around.

“It can be really scary. Luckily, I’ve never picked up MRSA, but I have friends who have picked it up. Some have gotten rid of it, some haven’t. It’s so disrespectful because it’s not a new issue, the government have known about this for a long time,” Orla stressed.

According to Orla, people with CF often don’t go into hospital when they are ill because they are afraid.

“The infection gets worse, but they wait until they get a bed. If there’s no bed they go through A&E and they’re exposed to everything there, you can stay there for three or four days. Only in a case when you’re absolutely gasping for breath are you moved into a CF ward,” she said.

“When I go to hospital, I should be able to go in for two weeks, get better and get out again but as it happens, I go in for two weeks, maybe three, I don’t get fully better. Whatever about the likelihood of infection, there’s also the psychological aspect. I’ve had patients die in the bed beside me. I’ve listened to priests say the rosary and you feel really bad about being in the room so you go out at four in the morning and stand in the corridor until that person’s body is taken out,” Orla added.

The importance of the new 34-bed unit in St Vincent’s cannot be underestimated. It is imperative that the Health Minister, the Department of Health and the HSE deliver on their promise this time. 2011 is already too late for many people with CF whose time is running out, and for the 25 young people who died last year alone. For many others, it cannot come soon enough.

hammer  Posted: 07/04/2009 12:10

They have NOT reversed the decision. They have put out SPIN to take pressure off the Govt and Mary Harney. As early as possible in 2011. Aren't they great..........................must vote Fianna Fail next time

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