OPINION:A manager came to ask me about my last hospital report. But it's the bigger picture that matters: everyone is trying their best in impossible conditions, writes ORLA TINSLEY.
LAST FRIDAY, after one week in hospital, I was feeling pretty good about things. I had been moved the previous night into one of the two old cubicles on the respiratory ward that had been the main cystic fibrosis ward before St Christopher’s opened.
I didn’t have an en-suite room but I moved into one later that evening. In that first single room I was relieved, I knew there were no bugs lurking in the air. I could close my door for peace and quiet and I could sleep. My lung was getting better too.
Things that don’t help are situations like the one that happened seconds after I had finished my physiotherapy on Friday. A member of management walked into my room and asked if I had a few minutes to spare. She asked if I was okay to talk, if not she would come back later. So I suppose I should have told her I wasn’t, but I am very open to discussing the issues, and it was either now or later.
She then remarked that the physio had been so long in with me and she had been waiting outside to come in. Physio is exhausting, but she still thought it was okay to wait and approach me. She had a copy of my last article in The Irish Times(Fighting with every breath to cope with CF hospital ordeal, May 1st) with pieces of it highlighted. She was treating it as a complaint, she said. Her aim was to resolve or improve any of the issues in the best way possible for everyone.
This woman was doing her job and throughout the conversation, she kept asking me if I was okay, she could come back later if I wanted. The bottom line was that she would be back anyway, and I’d probably be tired from something else, this being a hospital. It took every ounce of my energy to talk back to her about the situation. I felt I was talking back like a petulant child, defending something terribly naughty that I had done.
She had a particular issue with a line in my piece that said: “The nurse asked me to come in to put in my gripper needle to prepare me for AE because it would be highly unlikely that there would be anyone qualified to do it down there.”
This person wanted to know which one of my nurse specialists had told me that there was no one qualified in AE. I told her that it was not the opinion of a staff member but my own experience. She asked how did I know that.
Had I been to AE many times? I have, of course, and the point of all this is that nit-picking at the situation is hardly the answer to the much bigger problem. Calling up members of a multidisciplinary team who are doing their utmost in an impossible situation is hardly the answer. Coming to see a girl who has been campaigning publicly for the past month and telling her to come to you with her issues, and asking her to give the names of the team that help keep her alive in an effort to control the situation, is not the answer.
I said I would keep writing the way I always have because it is not about pointing the finger at any particular facet of a system that damages its patients. It is not about one person’s opinion of a system. It is about the reality that cystic fibrosis patients, their carers, and actually most people working in or attending a hospital in Ireland, are faced with every day.
Sending someone in a managerial position to talk to a girl in a hospital bed who has just written about her collapsed lung is hardly the answer. I am in one of the eight single en-suite rooms now and it is serving me extremely well. I am slowly starting to feel better and things are resolving for me. The difference being in this room the past week has been noticeable to me.
I am better rested, I am less stressed, I can cough during the night, use my nebulisers at whatever time I need to and not disrupt an entire ward. I have my own bathroom that I do not have to clean before I use it. I am not exposed to seriously threatening bugs like I would be on a mixed ward. Okay, I missed Bob Dylan but I got the new album and I’ll catch him next time.
These eight single en-suite rooms are a godsend. There is an exercise bike in my room which helps with my physiotherapy. A vital part of staying as well as possible with cystic fibrosis is exercise as part of physiotherapy.
In late 2007, I took up running. I could only walk/run for small periods of time at first, but now I can run for up to an hour and still feel okay afterwards. I am also weightlifting to improve and maintain the muscle mass that I lose every time I have an infection. Running makes me feel stronger mentally and physically, it clears my mind when I am stressed and helps me maintain a good lung function.
When someone with cystic fibrosis is unwell their exercise tolerance typically drops and sometimes they can’t walk around too much. For the 20-30 CF patients in hospital at any given time, there is only one physio room that doubles as an office for the six physios that work from that base. There is one treadmill and most patients need a 30-40 minutes slot in the room for exercise and airway clearance each day. There is just not enough space for CF patients or staff. Last week I got an MR880 machine, a machine that I needed to help me with my airway clearance but couldn’t get because there are only five available to CF patients and they were all being used by people who needed them just as much as me. However, patients do not always need them and when those machines are not in use I see them stored in between the treadmill and the filing cabinet.
The eight single en-suite rooms supply an area to exercise for some, but it is nice to be able to go into the clean, physio room for a change of scenery. Because there is such a lack of space, the physios open windows and scrub the place clean in between treating each patient to keep the standard of care impeccable.
There are so many other areas to the team too and this woman from management kept emphasising how tough a job it was for the staff. As if I didn’t know that.
Her resolution for my gripper needle situation was that a nurse would come down from an already understaffed ward to put it in for me if I came to AE at night-time. Again, she was missing the bigger picture. I should not, and neither should any other CF patient, be going to AE. We should not be exposed to any possible disease when there is a specialist team and staff ready to treat us with international quality care, if only they had the facilities.
This woman told me she called team members to ask them about different issues in my article, and I think it is a real shame to disrupt the people who are keeping the wheel turning in such an impossible situation. I think management are doing their best too, but it is an impossible situation.
She also asked me about whether or not she should go up to the previous ward I had been on and discuss the issues with cleaning toilets that I had. The absence of Azo-wipes, anti-bacterial wipes, to clean the toilets, was what was bothering me most as it meant I was cleaning other peoples hair off the toilet bowl with normal tissue paper.
The woman told me that they were looking into a different method of cleaning, the reason Azo-wipes were gone was because of elderly patients who were slightly confused and who used them in what was termed an “inappropriate manner”.
I asked why were these patients alone in a bathroom cubicle if they can’t decipher a box of anti-bacterial wipes from something else.
I didn’t get an answer. That is the bigger picture.