Orla Tinsley suffers from cystic fibrosis. Earlier this year, Orla received a People of The Year award for her campaigning in the Irish Times on behalf of cystic fibrosis sufferers.
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. The critical issue here is the limited availability of suitable isolation facilities in Irish hospitals. For optimum management of cystic fibrosis, patients require isolation in individual en-suite rooms to prevent cross-infection occurring but CF patients are being denied this opportunity. Instead, these vulnerable patients must present themselves to A&E where they are exposed to high risk infections while they await admission to a hospital bed. They are then transferred to a mixed ward to be nursed alongside mainly geriatric patients with a variety of illnesses. This practice beggars belief. The high rate of MRSA infection in Ireland has done little to ease the plight of the CF population. Not only is MRSA a constant threat to immuno-compromised CF patients, it’s prevalence has meant that the extremely limited supply of isolation rooms have instead been prioritised for MRSA infected patients.
I’ve written about Orla before to document the appalling hospital conditions which she and many other cystic fibrosis patients must endure. CF patients have been waiting for more than a decade to have a dedicated CF unit built at St. Vincent’s Hospital in Dublin and they are quite literally sick waiting.
Here is her account of her recent visit to hospital as published in today’s Irish Times.
“Dear diary: It’s Tuesday and I’m back in hospital for another blast of treatment for my cystic fibrosis, writes Orla Tinsley
I … ENTER St Vincent’s hospital in Dublin as I need treatment for an exacerbation of my cystic fibrosis. I have two options. I can go to A&E and wait on a trolley for a bed, or I can go home and wait on a waiting list.
Although my home is safer, I choose the A&E. I can’t continue in college or do the things I want to do if I am unwell, so I wait on a trolley.
A special type of needle, called a gripper, is used by most CF patients who have frequent infections. I need one now, but no one in A&E is qualified to put it in. A nurse from the designated CF eight-bed ward is called and comes down to put it in for me.
I am on a trolley in A&E and this procedure requires a certain amount of exposure. The porters are nice, the nurses are nice – they are both busy.
We ask if there is somewhere private for me to get my needle put in. There is nowhere. The specialised nurse and I think of what to do, she decides to take me out of A&E to try and find a room in the main hospital.
The A&E nurse stops us.
For a procedure that requires the utmost cleanliness, she says we can use the bathroom. The toilet in a busy, infection-ridden A&E is open to us.
We leave the department for the main hospital. It is after hours, treatment rooms are closed and wards pose a cross-infection risk. We eventually find an open door in a room that we know is clean and use it.
I go back to my trolley in A&E wishing I could have slept in that room. In A&E a nurse comes to give me my nebuliser through an O2 cylinder. I tell her that there are nebulising sets on the CF ward; if she could just ring them up she could get one. I’m sorry I didn’t bring my own, but she doesn’t understand what I’m saying. I explain twice more, then a porter who had been listening steps in. He tells her to leave it and goes up to the ward to get it.
There is no plug near the trolley I am on and so I have to wait before I can have it. I get moved to another square of the wall so that I can take my nebuliser. I then get moved into a curtained area for the night, and I am relieved.
The next day I am moved out to another curtained area. The nurse minding me is nice but busy, and late giving me one of my drugs. I ask her three times over the next few hours. Being on this drug long-term can affect kidney function, so the morning time is the best time to have it.
I use my mobile to call my CF nurse, who calls the A&E department and asks them to give me the drug. I still do not get it. I try calling my CF nurse again, but then my battery dies.
I walk up to their office and they call again, frustrated for me. They should not have to sort this out. I go back to A&E and get it.
Late that night I get a bed on the semi-private ward. It’s Wednesday night. I am in a room with a young girl, a lady with cancer and two elderly patients.
I am aware from the time my aunt was dying with cancer that I am not allowed to be around immune-suppressed cancer patients. Over the next few days I find out that the lady is in fact immune suppressed.
I am a danger to her, and I don’t think it’s a good thing to tell her.
One night the breathing of the elderly lady in the bed beside me gets worse. The next day her family are by her bedside and they keep apologising to me that it’s happening in my room. They are so, so sorry.
I tell them please, it’s not your fault. And I feel guilty that they feel so bad about it as they watch their mother die.
Another woman comes in, a new patient replacing the young girl. She is coughing violently, but seems pretty happy. She makes a phone call to a friend to tell her that at least she doesn’t have double pneumonia, like her neighbour, she only has pneumonia.
I feel the room shrinking.
She tells her friend on the end of the line: “Don’t get the sliced melon from Marks and Spencer . . . It’s right inside the door, I want the diced one,” she giggles down the line.
At that same moment a relative behind the curtain of the lady beside me says: “Is she gone? Yeah? Oh God.”
The other woman continues to talk on her phone. After the lady passes away her body stays in the room for three hours.
That night, another lady with cancer moves into the bed beside me. Her temperature has gone up so she had to come in. Both ladies with cancer are so much fun to be in a room with.
The lady who had just moved in is only starting to lose her hair, the other lady had already lost hers. She wants a “Posh Becks” hairstyle, like Victoria and David Beckham when her hair grows back. We giggle at the thought.
At every opportunity I leave the room to talk to the nurse about trying to get moved. Bed management are aware of the situation, but there is nowhere to move any of us.
I talk to the ladies about it and tell them I might write about it. They are meant to be in isolation, but they are not. I am a risk to them, and then there is the lady with pneumonia in the corner, who poses a risk to us all.
I try to sleep with a mask to protect myself and the people in the room, but it is sweaty and a bit restricting for breathing.
On Monday I am given the option of moving to a two-bedded room on the same ward. I accept and find myself in a room with one the kindest, most vivacious elderly ladies I have ever met. She is chatty, but knows when to leave me alone. She is a pleasure to share with, but even our camaraderie can’t disguise our different needs.
As she is unable to leave her bed, she needs the commode two or three times during the night. She is the nicest woman in the universe, but my cough is already making it difficult for me to sleep.
The rattle of the commode at 12.30am, 4.00am and 6.30am rips into my ability to rest. There is a smell too. It is not her fault, but I cannot sleep properly.
One day she is complaining of discomfort and extra swelling in her legs. I only become aware of it because this woman is not a typical patient.
She never complains, even though she has a chest drain in, which makes it impossible for her to walk around. That morning she complains a lot about her feet.
It is three hours at least since someone has been at her chest drain and I notice that it is clamped. I tell the nurse, he comes in straight away and deals with it. I ask a medical person about it later – chest drains should never be clamped unless they are about to be removed.
She feels better, we’re getting on well, but I’m still not sleeping well. We keep in good spirits chatting, and she tells me about how her handbag was taken while she was in hospital. Luckily her daughter was with her to cancel her cards and keep her afloat.
It wasn’t her bank card so much, but being without her reading glasses really upset her. She was told a member of security would come back to investigate the situation, but they didn’t.
There are 28 cystic fibrosis patients in as I write this, and there are eight single en-suite beds. The beds are allocated on the advice of the microbiologist. There is a long list to get into them. The eight single en-suite beds are on a new ward, but there are also general beds on that ward too for patients who do not have cystic fibrosis.
In February this year former junior minister for health Pat Gallagher said 14 single en-suite rooms would be available by the end of the summer for CF patients. I remember being told early this year that there would be six more, in another area in the hospital.
I ask a person in officialdom what is going to happen with the six other beds we desperately need until our unit comes at the end of 2010. This person tells me that there are no plans for six beds, that they have heard nothing about it. They have no funding; they have other things to sort out first. They want to see how the eight single rooms work.
Meanwhile, the winter months are coming, the number of cystic fibrosis patients needing inpatient treatment will rise. Some will refuse to go into hospital and risk damaging themselves, some will come to A&E, and risk damaging themselves.
Others can be treated at home, but if that doesn’t work they will have to come in anyway. Those who are not in the eight beds will continue enduring cross-infection, exhaustion and fear every time they are in hospital.
We will all think of the recession and what that means for us. We will comment to one another that 2010 seems like a lifetime away, and feel sick to our stomach that some of the 1,100 people in Ireland with cystic fibrosis will not see it.”
This article is published courtesy of the Irish Times online.