Why are people like me dying ten years earlier than other cystic fibrosis patients across the border, asks Orla Tinsley
In the dim light of the hospital ward, the woman in the bed beside me searches in vain for her long-lost relatives. "Maire! Sean! Paddy!" she cries, wandering towards where I am lying. As her fingers prod and stroke my back, I can only hope she soon comes back to reality and realises that I don't have her relatives hidden under my hospital blanket.
Such is the plight of cystic fibrosis suffers in this State that this afternoon the Cystic Fibrosis Association of Ireland (CFI) is meeting a group of TDs and senators to try to impress upon them the urgency of the crisis that has developed in the treatment of people with CF. I am writing this in the hope that somebody, somewhere will take action to address the appalling statistic that, on average, Irish CF patients are dying almost 10 years earlier than their counterparts across Europe because of unacceptable levels of care.
When I was three days old I was diagnosed with cystic fibrosis, a chronic genetic disease that severely affects the lungs and digestive system. Because of this, my life is punctuated by two-week stints in hospital. In the past year my illness has accelerated, leaving me hospitalised every month since October 2004, with roughly a nine-day respite between hospitalisations. My days revolve around nebulisers, inhalers and injections, not to mention my harsh, hacking cough. That's my reality and I can live with that.
But late on this particular night, as I lie in my bed in St Vincent's Hospital, I realise there are certain things I should not have to live with, not in this booming Ireland of 2005.
Before I turned 18 I took a while choosing which hospital I would go to for care, in much the same way other people my age make those vital CAO form decisions. For most of my life I'd been in and out of Temple Street Hospital and I knew that the leap to adult hospital was always going to be precarious.
Now here I am, officially an adult, being cared for in what is effectively a geriatric ward. As the woman in the bed beside me continues her search for her family members, I am struck by how silly it was of me to turn 18. I will myself to be transported, Star Trek-style, back to the howling babies and hyperactive toddlers in Temple Street. Who cared if my feet hung over the end of the bed? I was safe there. Away from this cacophony of chaos.
The bond I had formed with the children's hospital had been unbreakable. The nurses, doctors, dieticians, phlebotomists, teachers, play staff, physiotherapists, administrators, porters and surgeons were integral parts of my life and they all played a big part in my personal development. It seemed their ethos was that although there is an illness there, there is also a person. A living, breathing, thinking human being. A person with an illness, not an illness with a person attached. I had got used to that ethos.
I've been taught, trained and virtually brainwashed about the way to take proper care of myself by the dedicated team at Temple Street. A structure of beliefs, medical evidence and ideologies were instilled in me so that I could protect myself with regard to my CF.
There are organisms floating around in the air that are dangerous to a person with CF, and one of these is the "superbug", MRSA. When I was admitted to St Vincent's I spent my first two nights in the casualty jungle, metres away from a man who had the bug. Fear flooded my mind as I thought of the germs floating around, germs that were harmful to a healthy person but that could prove fatal for me. It was a massive culture shock. What was to become of me? Four different beds in three days, that's what. From paediatrics to geriatrics, that's what.
A close friend of mine, who also has CF, likes to refer to us affectionately as "Lifers". Every minute of our life is affected by CF, thus every minute should be properly catered for. We take great care in the "outside world" to live life conscious of every threat to our very existence. Why is it that the health services, during those times when we are at our most vulnerable, do not do the same? We are not even asking for special treatment, just basic human rights. We need to be cared for in isolation and should not be put at risk of infection. But this does not happen in hospitals across the State.
Another night in the hospital I turn up Andrea Corr on my headphones to maximum volume, to block out a different kind of music. The woman across from me needs to use the bathroom. "Nurse, Nurse! I need the toilet! Nurse! Are you deaf?" Her glazed eyes turn towards me and her head rolls demonically, her tongue hanging out. "Maire! Sean! Paddy!" the woman to my left joins in, their cries an unbearable duet of desperation. I flap back upon my bed, my body thudding against the mattress. Then the woman who needs the nurse clambers from her bed screaming "Help! Help! Help!" and her excreta drop on the floor behind her. All I can do is open my window and wonder how I got here; from safe hospital to what seems a geriatric asylum.
I should point out that my medical needs have not lessened because I have turned 18. If anything, they've increased. Diabetes and osteoporosis tend to set in as people with CF live longer. I am 18. These women are 80. Our needs are completely different. They need bedpans. I need clean bug-free fresh air.
I don't just want to highlight the situation in St Vincent's Hospital. A review of hospital services across the State recently showed that it's the same story elsewhere. According to the latest research, the median age of death for CF patients in the Republic is 21, compared to 30 in Northern Ireland; people born in the US with CF in the 1990s are expected to live until the age of 45.
They have a better system across the Border. They have more funding. The CFAI is currently part-funding the provision of desperately needed specialist staff across the State but it should not have to do the job of government.
The curious thing about all of this is the fact that we are among the richest nations in the world. We have a vast disposable income, we have new cars, high-class restaurants, a higher standard of living. We are no longer the poor relations. Well, except for our elderly, except for our school buses, except for people with CF.
I spent night after night listening to the ramblings of my more senior room-mates and wondering why it is that in Ireland CF patients don't seem to be entitled to life-prolonging hospital care. The blood-stained tray on which I received my antibiotics from during my time in A&E recently proves that.
Disgusting? Yes. Degrading? Absolutely. Normal? Unfortunately. Acceptable? What do you think?
• "It is apparent that the conditions in which Orla was treated were less than ideal," says Nicholas Jermyn, chief executive of St Vincent's University Hospital. "I wish to apologise to Orla and to any other cystic fibrosis patients who may have experienced similar situations.
"Moving from the care of a paediatric hospital to an adult hospital environment is difficult for patients at the best of times. The hospital is constrained by its physical resources and by ongoing, relentless pressure on the availability of beds. Therefore, it is not always possible to segregate cystic fibrosis patients from other categories of respiratory patients, including elderly people also in need of care.
"The hospital is working closely with HSE and the Department of Health and Children, in co-operation with the Cystic Fibrosis Association of Ireland (CFAI), to improve facilities for cystic fibrosis patients. In the short term, in consultation with CFAI, we are examining how to best utilise some additional space that has become available."
