When 19-year-old cystic fibrosis sufferer Orla Tinsley fell ill on holiday in Italy this week, it reinforced to her just how shameful Irish facilities are
Italy may be World Cup champions, but they are also miles ahead of the Irish when it comes to cystic fibrosis (CF) services. This week, in the 38-degree heat of Florence the humidity got to me and I was forced to see the beauty of Firenze amid ambulance sirens and incomprehensible Italian.
During my first night I spent two hours on a trolley, after which I was moved to a three-bed room for the night. The next day I was transferred to the national referral centre for CF, our equivalent being St Vincent's University Hospital in Dublin. Although it was a paediatric hospital it catered for CF patients of all ages. I was nervous, but the language barrier disappeared when I entered the CF dream.
I had my own room with bathroom en suite - the required standard for someone with CF, a genetically-inherited disease which causes a build-up of mucus in the lungs. When you go to hospital in Ireland it is usually a struggle to get a bed. When you get one, you spend two weeks in a six-bed room where you are at risk from the infections of other patients.
Sometimes there is more than one CF patient sharing the room, which is detrimental to health. CF demands discipline and methodical behaviour. A daily routine of nebulisers, inhalers and pills must be followed. I found in my single room that this was easy to follow without fear. The bites of a few measly mosquitoes were nothing compared to the threat of contracting MRSA.
My Tuscan doctor also informed me that they are currently building another unit beside an adult hospital. Our plans were drawn up 12 years ago and while facilities are promised there is still nothing.
My room was basic with a bed, en suite, table and chair. It sounds luxurious but is necessary, as outlined by the Pollock report on Irish hospital services published in February 2005. Dr Robbie Pollock, an international expert in health service provision and planning, recommended that all beds for CF patients should be in single rooms with en suite facilities to prevent cross-infection - CF sufferers very vulnerable to infection - that a small number of adequately staffed cystic fibrosis centres should be established and that a microbiology reference laboratory should be established in Dublin to support those centres.
As it is for many patients, another factor in hospital care is privacy and ability to sleep. Often you experience someone dying in the room: you see shapes of relatives through the curtains, hear the rosary and final whispers of loved one to loved one. It is gut-wrenching.
The single room in the Italian hospital was the ultimate in privacy, and it was extremely colourful, which also helped me feel better. The furniture was plastic and thus easy to wipe to prevent infection. When everything around is slow-moving it can get into your psyche and cause a depressed feeling. But the provision of a table encouraged me to get up and eat, and would be beneficial if a patient needed to study.
Being able to have a shower without having to worry about wading through soapy water and scooping out someone else's pubic hair really was nice. The cleaners cleaned the bathroom twice a day. There was no dirt in the grates and no mysterious brown stains in the shower. Sharing a bathroom when you have CF is unacceptable and dangerous. Infection is airborne and can be transferred through door handles.
On the toilet door in St Vincent's there is a sign that reminds you to clean the seat with disinfectant wipes before use, but during many of my stays in the hospital there were no wipes. As graphic as it sounds I sometimes levitate above the toilet seat in desperation.
While the staff and care in St Vincent's hospital are excellent, the facilities hamper any chance of proper recovery. The allocation of room-mates is down to pure luck and sometimes they can be particularly noisy. When it's bad, I take sleeping tablets to try to rest my body. The tranquility of a single room allowed me the luxury of dreams, unlike the nightmarish rollercoaster at home. Usually at the end of the treatment I am unsure whether I am unwell or it is the lack of sleep.
Being able to cough freely during the night was fantastic. Sometimes I suppress my cough because I don't want to wake the patient beside me again. The situation is unfair on all parties. At times it is hellish when, with two hours' sleep, all you hear the next day are the complaints of people who do not understand your illness. I have also been cursed by senile patients for opening windows to free the pong of bedpans.
Such a simple room really means so much. Sleep, treatment and the capacity to get better quicker, not to mention protection from bugs.
In the UK the average age of survival is 30; in the US it's 36. In Ireland it is a good deal lower. People are now living longer compared to the past, but without proper treatment facilities. At the beginning of this year, €4.78 million was earmarked for improvements in CF services. Yet, Irish facilities are still inadequate, as outlined during the week by Denise Saul, the courageous CF patient who confronted Minister for Health, Mary Harney on the subject outside St Vincent's hospital.
In the 2005 Budget, €300,000 was allocated to the CF services in the hospital, with the money going towards a new consultant, which we desperately need. St Vincent's hospital now has two consultants for 300 adult patients. The Tuscan region has 150 patients with CF and three consultants specialising in lungs, gastro-intestinal and CF-related diabetes. Ireland has the highest instance of CF in Europe, yet has Third World facilities. The situation is unfair to not only the patients but the over-worked, compassionate staff.
After my one night in the Italian A&E, a doctor came into me and apologised for my having to spend a night with two patients, including one who was much older. I laughed and admitted to it being nothing compared with home, which filled me with a surprising sense of shame. He looked puzzled and mumbled something about his English being bad.
If only he knew.