Not given the chance

We are living in a world gone backwards. If there’s one thing about the Irish government that is guaranteed to make me angry and frustrated, it’s their callous disregard for the plight of cystic fibrosis (CF) patients in this country. Ireland has the highest incidence of CF in the world and to it’s shame, it can also claim to have the highest mortality rate and the lowest life expectancy for CF sufferers. Last week, a whole generation of CF patients was given a death sentence with the announcement that the funding for a dedicated cystic fibrosis unit, has been pulled. At the moment, CF patients must endure  appalling hospital conditions with a high risk of cross-infection, in order to get the treatment they need to stay alive. This government is reponsible for many failures within the health service but the scandal of CF care in this country, is beyond belief.

Here’s what Eithne Donnellan, Health Correspondent of the Irish Times, had to say on the subject..

HSE postpones promised new cystic fibrosis patients’ facility

A PROMISE by the Health Service Executive that a brand new building with state of the art accommodation for cystic fibrosis (CF) patients would be provided at Dublin’s St Vincent’s hospital by 2010 is not now going to be honoured, it has emerged.

The HSE has confirmed that funding for constructing the building which would have about 30 single rooms for CF patients will not be available “until 2011 at the earliest”.

Godfrey Fletcher, the chief executive of the Cystic Fibrosis Association of Ireland, said the news was a major slap in the face for patients who have long campaigned for better facilities.

CF patients are prone to picking up infections and as a result should be accommodated in single ensuite rooms. After an outcry over the lack of isolation facilities for CF patients at St Vincent’s, which is the national adult referral centre for the condition, in early 2008 the HSE came up with an interim solution. It said 14 single rooms would be provided while a new block at St Vincent’s with a total of 120 beds – about 30 of which would be for CF patients – was being built. It said it would be ready by 2010.

However, HSE replies to written questions from members of the Oireachtas Health Committee, distributed this week, show that not only has the new block been delayed, but only eight of the 14 single rooms as part of the interim solution have been delivered on.

“The HSE had intended in early 2008 that another area of the hospital could also be reconfigured to provide an additional six single rooms on an interim basis. It has not yet been possible to realise this proposal due to other pressures at the hospital which required the use of the intended area as a decant facility to enable other essential capital works,” the HSE said in its written reply. “Design work and preparation of tender documents continues in respect of the proposed new ward block . . . the HSE’s capital plan shows that capital for construction, however, would not be available until 2011 at the earliest,” it added.

Mr Fletcher said the eight single rooms provided last August were very welcome and already patients using them were recuperating much faster. But the news that there would not be money even to start the new block until 2011 had come as a great shock to his organisation, he said.

“We were under the impression that it was to be a quick-build contract to be completed by 2010.” The fact that it was not was very serious, particularly when all the promised interim beds had not even been provided, he said. He predicted his members would be “rioting on the streets” if the promised single rooms were not forthcoming.

The lack of isolation facilities at the hospital for CF patients was condemned in a 2005 report by UK consultant Dr Ronnie Pollock. It said the lack of segregation and isolation for CF patients was dangerous and there was a risk patients who picked up infections would sue. It noted that Ireland has the highest incidence of CF of all European countries and there were “also strong indications that outcomes in Ireland are worse”.

Source:  Irish Times online.

Orla Tinsley, a CF patient and campaigner, wrote in response to the latest government announcement…

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

Source: Irish Times online

Our Government has failed miserably in it’s duty of care to these young citizens. Sadly, many of them will not live long enough to benefit from the dedicated unit when it is finally commissioned. When you consider the millions which have been spent on consultants’ reports which are left sitting on shelves in the HSE, it makes this scandal all the harder to swallow. Cystic fibrosis patients are fighters. They have to fight to breathe and to keep their food down and now they are fighting for a chance to live.  They don’t deserve to have that chance taken away.  It’s an absolute disgrace.

Last Friday, Joe Duffy, presenter of ‘Liveline’, dedicated his whole radio show to talking about the problems faced by CF patients.  You can listen back to the show on the link below. Be prepared to be moved.

Liveline – RTE Radio

5 Responses to Not given the chance

  1. Good lord, Steph, this is completely appalling! It’s outrageous, shocking and disgusting. Frankly, beyond that, I am at an utter loss for words.
    Perhaps the best thing to shock the government into action is for CF patients and their families to start suing, they certainly have the grounds to do so.
    What a travesty.
    But you know what the sad thing is, this sort of behaviour, economy before anything else, is a worldwide phenomenon, which plays itself out in multiple ways. What we need is a complete change of consciousness, a whole shift in our humanity – or lack thereof.

  2. Annb says:

    This is just too distressing – I find I can’t even discuss it without breaking down. I’m with Absolute Vanilla on this – The only thing the HSE responds to is a legal challenge. This is a completely A-moral institution with a callous disregard for the health of the nation. Battling for your life is hard enough without having to suffer the indignity of also fighting an inhumane system. Shame on the HSE and Dept of Health – I don’t know how those people can sleep at night.

    Nothing short of a complete revolution will suffice I think.

  3. Baino says:

    Terrible news for sufferers Steph. Our State Government has just announced a whole revamp of the health system including new infrastructure. Driven largely by a need to get the economy going and to provide jobs for medical staff and hospital construction alike . .whatever the motive, hopefully it will see our hospitals improve greatly. I wonder why the incidence of CF is so high in Ireland?

  4. Steph says:

    AV – It is disgusting isn’t it? The government’s failure to introduce the cervical cancer vaccine and also a screening programme for bowel cancer, is bad enough but I cannot accept their complete disregard for the lives of young CF sufferers. The lack of isolation beds was condemned in 2005 and even though this was during the boom years, they still failed to prioritise the building of a dedicated unit.

    Ann – Sorry, I didn’t mean to distress you. You have enough to contend with without worrying about others as well.

    I am very familiar with the hospital in question and I know exactly how bad the conditions can be. The CF patients are not asking for hotel facilities, they just want somewhere where they can relax to ‘get better’ instead of having to fight for survival. The government had to be embarrassed into providing 8 single ensuite rooms last year (it should have been 14) but this is only a drop in the ocean.

    I hope that the CF association will mount a campaign to embarrass the government further. It is a totally unacceptable situation and we should all be shouting about it.

  5. Steph says:

    Baino – Sorry! You got stuck in spam (why I’ve no idea) and I only just rescued you now.

    Ireland not only has the highest incidence of CF in Europe but it also has a particularly virulent strain of CF. I don’t know why.

    When the scandal broke about the lack of CF isolation rooms in January 2008, several private investors came forward to volunteer funds to get a temporary unit up and running. This was rejected by the HSE who promised 14 temporary isolation rooms with a further 30 promised once the dedicated CF unit was built. It’s now 16 months later and only 8 single rooms have been provided so far and plans for the dedicated unit have been put on hold. It’s contemptible! It doesn’t matter how bad the economy is or will be, no amount of government rhetoric can justify the about-turn needed to prevent needless early CF deaths and infection.

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