It’s Just Not Fair

It is a disgrace and a source of national shame that in 2010, in the country with the highest rate of cystic fibrosis (CF) in the world, we still do not have a purpose-built adult CF unit. An independent review of CF services in Ireland by Dr R.M. Pollock, published in 2005, found that most adults with CF were being treated in facilities that were dangerously inadequate. In reality, very little has changed since then for CF inpatients. The average life expectancy for a CF person in Ireland is a full 10 years lower than in Britain or the US, largely because of the failure to provide specially trained staff and sterile, en-suite hospital facilities. It’s just not fair that people with CF should be spending so much of their already short lives waiting for the most basic of services.

St Vincent’s Hospital, Dublin is the national adult referral centre for CF patients in Ireland. Last year, the HSE said that it didn’t have the money to go ahead with building a special 120 bed facility, with 30 en-suite rooms to cater for these patients. The public outcry that resulted, led our Minister for Health to declare that an alternative funding approach involving builders and banks, could deliver the facility as promised. This latest hold-up has come about as a result of a failure on the part of the Department to award a tender to construct the €40 million unit.

Orla Tinsley is a young woman with cystic fibrosis. For the past five years, she has campaigned vigorously for the provision of a dedicated CF unit. While receiving urgent medical treatment at St. Vincent’s hospital last week, she wrote the article below about her frustration that the designated site for the new facility remains empty…

“OPINION: The news that there has been further delay in the cystic fibrosis unit at St Vincent’s hospital in Dublin is disheartening, but hardly surprising, writes ORLA TINSLEY

Five years ago this month, my first article was published in this newspaper. I wrote about being an 18-year-old with cystic fibrosis treated in the national referral centre, St Vincent’s hospital. It was my first experience of sleeping in a room with senile and confused women who coughed, pooped and died in the room in which I slept.

I didn’t understand how the rules on cystic fibrosis care could change so much from a children’s hospital to an adult hospital. As a child I was not allowed to share a room with someone who had cystic fibrosis because of cross-infection.

In Vincent’s, sharing a room with another CF patient was a common occurrence until two years ago because there was no other space. I shared a room with a girl who also had CF and we became great friends over the summer months we were in there. We stood outside the hospital on the June bank holiday eating cool-pops and watching the mini- marathon go by. A month and a half later she was dead.

It was the first time I fully realised that CF is something you cannot control, although it takes a while to accept.

I ran the mini-marathon two weeks ago and finished in high spirits. When I sprinted past Vincent’s, I thought briefly of that day and was glad to be running. The next day I flew to Barcelona and lay on the beach, relaxing for five days. I had gotten over the previous rough summer of spontaneous lung bleeds that halted my life and made it impossible to plan anything. I had gotten over the collapsed lung last year and I started work, like any 23-year- old, which feels so great.

Then I got some shoulder pain: my lung had collapsed again. Had I trained too hard or done something wrong? My consultant said it was just one of those things that happens with cystic fibrosis.

Admitted to Vincent’s a week ago, I was put on 100 per cent oxygen to try and reinflate my lung and given painkillers. My medical team were incredible and I got a bed immediately.

For the first two days I shared a room with five other women on a ward where the staff did not specialise in cystic fibrosis. I was exhausted and filled with painkillers; I was not as aware as I needed to be. When I had to go for an X-ray, the nurse looking after me said I didn’t need oxygen to go along with my wheelchair. My oxygen saturations were good and it was a short trip.

I explained she was wrong, the oxygen was flushing the nitrogen oxide out and encouraging the lung to reinflate. We argued but I left without oxygen. I waited there without oxygen among patients who were coughing.

The ward sister apologised that I had been left without oxygen.

The distressing element of this scenario is that if I was in a unit with nurses specially trained in CF, this would not have happened.

I am just one person with cystic fibrosis and each person’s story is so individual. When I am not sick I work as hard as I can and I love my life. I know some day that that will end, things will get slower, I will spend more time lying in beds with various tubes.

I will be unable permanently to make that choice to get up myself and walk away from a screaming room-mate or a dying woman or drag all my medical equipment and tubing with me to sleep in the corridor, as I have done on previous occasions.

Not being able to access a single en-suite room when I needed one was not surprising, but it was frustrating. The lack of sincerity in the Government commitment to our dedicated CF unit is disheartening and degrading to the 1,300 people living with CF on this island.

There has also been no commitment to the number of beds that would be specifically ring-fenced for people with cystic fibrosis in the 100-bed unit that will treat many other illnesses.

We need 34 beds to deal with the daily intake of patients with cystic fibrosis. These beds cannot, as it has been suggested by those in charge, be given to other patients if people with cystic fibrosis are not there to take them.

We need cleanliness and exclusivity. We’re not asking for gold-plated oxygen tanks, we’re just asking those in power to help us stay alive in rooms that comply with international standards.

This litany of broken promises is embarrassing for Ireland. When I talk to patients or parents of young children abroad they are continuously shocked by the standard of care for CF patients here.

They have offered money to sort out our Irish mess.

I do not want to die in our Irish mess.

The eight single en-suite rooms at the national referral centre are not enough. We deserve single en-suite rooms when we present at hospital with a mild exacerbation or a painful, collapsed lung. It is the only way to get full quality treatment for most patients with multi-faceted cystic fibrosis.

People waiting on the transplant list deserve to be in single en-suite cubicles.

This time coming into hospital, I didn’t have to go through AE, but I will have to again. This time, no one used the room I slept in as a toilet or had MRSA or screamed throughout the night, forcing me to sleep in the corridor.

But it will happen again and is happening to other people with cystic fibrosis around Ireland who are exposed to life-threatening cross-infection as you read this.

The Pollack report was published in 2005. It  In reality, very little has changed since then for CF inpatients. When building eventually starts on the unit, it will take 14 months to complete.

We live in hope with a heavy dollop of cynicism, as always.

I walked by the site in the sunshine the other day during physiotherapy. It sits there, decanted and waiting, just like the rest of us.

If there’s such a thing as campaigners fatigue, I may be experiencing it. I have been writing the same thing for five years. It’s a depressing thought that I will be doing it for another five”.

I salute Orla Tinsley for writing this courageous article. It’s a damning indictment of our government’s appalling lack of commitment to CF patients who continue to be exposed to life-threatening cross-infection. The Irish political system is rotten to the core if it can allow this issue to continue. It’s just not fair!

Information Source: The Irish Times 25/06/10 and 26/o6/10 and The Cystic Fibrosis Association of Ireland.

7 Responses to It’s Just Not Fair

  1. magnumlady says:

    I agree, it really isn’t fair. The health service in this country is very poor.

  2. Annb says:

    It’s just so depressing to witness I can’t imagine what it must be like for Orla, her family and the many other CF families. She is an amazing advocate I hope the powers that be have the humanity to be ashamed of themselves – although experience has thought me that they don’t – I never give up the hope that some day they might find it. Well done Steph, for your continued solidarity to those who fight the system, I for one, really appreciate it.

  3. Steph says:

    magnumlady – It seems this government is more interested in protecting animals than looking after this exceptionally vulnerable group of citizens of our State. I know only too well the awful conditions that Orla and her fellow CF patients endure and I can assure you that they are totally inadequate for people who are particularly susceptible to infection.

    Annb – Thanks! I simply can’t stay quiet when I see injustice such as this. This hold-up is just the latest in a series of delays on this vital project.The government’s response to the needs of the CF community has not only been cruelly inadequate, it’s immorale. As Orla says, the CF sufferers are not asking for gold-plated oxygen tanks, all they want is that we as a State show some care. They and their families must feel very badly let down at this stage.

  4. Geri Atric says:

    Horrific! What will it take to make politicians wake up to this terrible disease? Petitions to local MP’s and lots of noise and picketing outside their houses?Heaven forbid that their own children should be born with it before they act? (Not that it is relevant to Ireland, but the UK’s ex Prime Minister Brown’s youngest son has CF. Don’t know if that was instrumental in achieving better care for Britain’s CF sufferers – or even if it IS that much better?). Orla Tinsley’s article must surely be a start to getting something done about Ireland’s approach to CF. I do hope so.

  5. Steph says:

    Geri – Thanks for your support.

    Orla has been campaigning vigorously for 5 years (since she was 18) to get funding for a dedicated adult CF unit. Every time there is a public outcry (on radio/print media etc), the government responds with false promises and a new time frame for the completion of the unit. As you say, things would be very different if they had reason to avail of CF facilities themselves.

    The Pollock report, issued 5 years ago, was damning of the facilities available for Irish adult CF sufferers, describing them as dangerously inadequate. It’s absolutely scandalous that 5 years have passed and little has changed. It makes me ashamed to reside in a country where vulnerable citizens are so mistreated by the State.

  6. Lorcan says:

    I know Orla, we went to playschool together and to be honest, when I imagine a day (which I hate to imagine) that means she will end up being unable to independently choose to get out of bed and be as active as she now is, it sickens me. It sickens me to think she’ll be in the same awful conditions again because the cynical part of me believes our government might not have even started to build that unit. I hope, for all CF suffers and not just Orla, that I’m wrong.

    What kind of insanity are we putting up with in this country that something like this is allowed happen? When a government is appointed by its people and then does not deliver to its people what they need (because this is a question of need), that to me is a failure in its so-called democracy.

    Kudos to Orla, her strength is astonishing.

  7. Steph says:

    Lorcan – Welcome aboard!

    I’m about 30 years older than Orla and when I was in hospital for 4 weeks last summer (on the same unit as Orla), I was the youngest (by at least 20 years) of the women in my ward. I found it very hard-going sharing a ward with incontinent/ bed-bound/confused/psychiatric patients so I can well imagine how grim this must be for Orla.

    It is insanity putting CF patients into those conditions as they are highly susceptible to cross-infection. Our government should be ridiculed for allowing this atrocity to persist. Thankfully, Orla does a good job at rubbing their faces in it!

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