Need I Say More?

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.

7 Responses to Need I Say More?

  1. bainbridge01 says:

    Speechless. At least the Irish Times had the gumption to print it. Long story well told by this poor girl. My heart goes out to her. Let’s hope your demonstration last Saturday will go somewhere to fixing this and the 1% tax that you’ve all been levied on your incomes is diverted into much needed hospital care.

  2. My god, what a story, Steph. The sheer honesty and lack of emotional excess with with Orla writes is gut wrenching. I find it so hard to believe that Irish health has come to this – despite all your posts. I remember how well I was looked after at St Vincents, how everything seemed to work. It was a far cry from the public hospitals in SA. Now I think the healthcare system pretty much everywhere, like the global economy, is just in total disarray – and it comes down to money misspent, management instead of health care, and totally screwed up values.

  3. Steph says:

    Thanks! Baino and AV

    This article still brings tears to my eyes when I read it. Orla’s life is on the line, she can’t afford to play Russian roulette with her health. The medical care is excellent in St. Vincent’s Hospital but the physical conditions which CF sufferers are forced to endure, are a national disgrace. Rest is such an important part of the treatment regime for CF patients but they are denied any hope of this in St. Vincent’s.

    A dedicated isolation unit staffed by specialist CF nurses, is desperately needed. These young sufferers haven’t any time to waste.

    I intend to publish a contrasting article in a few day’s time.

  4. Bendy Girl says:

    That is one of the best articles I’ve read, she describes the vulnerability and impotence of hospital patients so well.
    I wonder if the situation for CF patients in the UK is any better or worse, especially as Gordon Brown’s child has CF. Not that I’m that cynical. Oh no.
    Hope you’re all better Steph, hugs BG x

  5. Steph says:

    Thanks Bendy

    I am all ‘better’ or at least, all ‘neutral’ following 10 days of a high dose antibiotic which seems to have done the job. I’ve a check-up with my surgeon next week to review scans, medication etc but really, I’m sure there’s no cause for concern

    Orla’s article really resonated with me as I well know the particular hospital she attends and I can tell you she’s not exaggerating a single thing. I feel very angry knowing that there are private ‘for-profit’ hospital facilities nearby which are really luxurious by comparison but of course, there’s no profit to be made in CF care! There’s no justice in health care any more and lives are being lost while our politicians play games with the health service.

    As you say, CF facilities in the UK are more likely to get the priority they deserve now that the PM has a personal interest. It seems nothing is done around here until another scandal hits the headlines and even then, it’s all talk and no action 😦

  6. O my God is all I can say.

    Our country is a fucking disgrace

  7. Steph says:

    Paddy

    I’m delighted to see this response from you.

    I despair sometimes over the apathy in this country to the state of our health service. The medical care we receive in Ireland is bloody fantastic, the staff that work in the health service (on the whole) are totally dedicated but the conditions that they and their patients must endure, are a holy disgrace. Why do people wait until things go wrong before they’re prepared to speak out. After the furore that took place last year on the airwaves about the lack of a proper unit for CF patients, it’s totally sickening to hear that Orla and her contemporaries, still have to fight for their survival.

    If Orla was my daughter, I’d firstly be very proud of her but I think I’d also be worried sick about her each time she had to go into hospital knowing what I do about the conditions she faces.

    I’ve done my fair share of time in Vincent’s. I’ve put up with the lack of privacy and rest, I’ve used the shared toilet blocks (male and female) and the filthy showers and the wash rooms which are like something out of the dark ages and I can’t believe that nothing is ever done about it. And what really riles me is that the contrast between the public and private hospitals, seems to be growing wider every year. Why are Dickensian conditions alright for some but not for others? Answer me that one Mary!

    Mary Harney has done NOTHING to improve the very basic facilities in the public hospitals. Her ideology of promoting private healthcare over a system of a universal healthcare, seems to have completely blinded her to the reality of conditions in the public hospitals. Or does she really not care?

    So Mary, where are the new CF facilities that were promised at the beginning of the year? And before you start churning out any more of your boring statistics, please remember that there are lives out there depending on your answer!

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