Life or Death

There’s been a lot of hype recently in Ireland about the appallingly inadequate hospital services for adult patients with cystic fibrosis (CF), and rightly so. Put simply, our Government’s failure to provide a dedicated CF unit in this country, is costing lives.

The critical issue here is the limited availability of suitable isolation facilities. 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.

When I was first diagnosed with an MRSA infection following surgery, I was hurriedly moved out of a general ward into an en-suite isolation room to be barrier nursed while receiving intensive IV treatment. I felt like vermin and in reality, I represented a high risk to those patients whose immune systems are compromised by disease or treatment. I was eventually discharged home on oral antibiotics but the infection recurred and I was re-admitted through A&E for further IV treatment in a single isolation room. I was again allowed home on oral antibiotics but the infection worsened and I soon had to come back into the hospital. On this occasion I was transferred from A&E to the MRSA isolation unit where all patients with MRSA are nursed together. This unit was full of elderly patients, it was poorly ventilated and I felt distinctly uncomfortable with the high risk of cross-infection there. During my stay, I would spend the evenings sitting outside the door to the unit to get fresh air and to escape the blaring televisions. None of the staff ever objected to this practice. As my health improved, I soon ventured further afield to use the hospital coffee bar as a venue for meeting visitors. Nobody advised me otherwise and indeed, I often met doctors I knew while on my travels and they’d stop for a friendly chat. The point here is that as a carrier of MRSA, my outings put other patients at significant risk of cross-infection. This stark reality was brought home to me when listening to the recent public debate on CF issues. At the time, my only concern was self-preservation but now I realise that I should never have been allowed to wander the hospital corridors. If anyone is to blame, it is the hospital authorities for their slack policy of infection control.

Ireland has the highest incidence of CF in the world and yet we have the highest mortality rate and lowest life expectancy. CF patients have been waiting for more than a decade for a dedicated CF unit to be built and they are quite literally, sick waiting. Our Government has failed miserably in it’s duty of care to these young citizens. Lives are being shortened and young people are dying as a consequence of our inadequate hospital services. This really is a matter of life or death.

14 Responses to Life or Death

  1. Grannymar says:

    I am so glad I never moved back to live in the south. Folk moan about the DHS here but personally I have to say that in recent years I have always had good treatment.

  2. Bendygirl says:

    That’s horrifying. As an aside you may be interested in the documentary just about to start on Ch4 ‘A Boy Called Alex’ about a young musician with particularly severe CF. BG

  3. Steph says:

    Hi! BG

    Thanks, that’s exactly what I was watching and I’m blown away by it. What an amazing, awe-inspiring guy Alex is! And like so many CF sufferers, he remains feisty and resilient even though the odds are stacked against him.

    Some good news came through today on a potential solution for managing the CF crisis in Ireland. The Cystic Fibrosis Association has met with private developers and sponsors and plans are going ahead with all speed for developing a temporary unit comprised of individual en-suite rooms. At long last, some hope is in sight for CF sufferers and it’s no thanks to our Government. The best they could offer was late 2009 for a new CF unit but this will be TOO LATE for many.

  4. That is appalling – I never realised the healthcare system in Ireland had gone so terribly pear-shaped. What, I wonder, went wrong?

    By the way, on a lighter note, and just for fun, you’ve been tagged for a meme, if you feel like doing it, over at my place. 🙂

  5. Ian says:

    Steph,

    The figure I find most depressing is the ten year difference in life expectancy for people with CF between Northern Ireland and the Republic – 31 in the North, 21 here. I have a member of my church who is a physio with CF sufferers – her tales of bravery lift the spirits.

  6. Steph says:

    Hi Ian

    I agree – the statistics for life expectancy in the Republic are thoroughly depressing. And all because our health policy is directed by political deals not medical need. I heard recently that the average life expectancy for CF sufferers in the US is 37 years!

    Listening to the many CF patients talking on the radio over the last couple of weeks, you couldn’t help but be struck by their bravery. Most of them have faced adversity all of their young lives and yet you rarely hear them complain. They are incredibly resilient. It’s heartbreaking to think about the conditions they endure in our hospitals especially when it’s known to be so detrimental to their health and survival – they deserve so much better.

  7. Baino says:

    I must admit Steph, I’m pretty ignorant of the disease altogether and how infectious diseases are quarantined here but I agree with you when you say walking the corridors with an infectious condition wasn’t stemmed. During recent foray into the hospital I was free to move around, in fact encouraged to move around. Whilst I was ‘housed’ in a maternity/obstetric ward, I wondered the corridors without knowing what conditions other patients had and nobody batted an eyelid. The only ‘control’ was a requirement to wear shoes.

    You know in the ‘old days’ my mother contracted tuberculosis, nursing children in Withenshaw Hospital in Manchester. She had a lobe of her lung removed and a 2 year hospitalisation on bedrest. The pre-antibiotic remedy included mandatory sunshine. Patients were wheeled out into the fresh air for an hour or two each day. Contain patients and their disease, and you also contain infection within that environment. There’s much to be said for some of the old fashioned practices

  8. Grannymar says:

    Baino’s point remined me of something. I was always one for throwing open windows first thing in the morning, winter and summer. I started in our bedroom and worked my way through all the rooms on my way to the kitchen. Busily preparing breakfast, next thing I knew Jack was beside me. “Huh!” he said “Anyone would think we lived in a Sanatoriun!” He winked, whistled and was out of my reach in a flash!

  9. Steph says:

    Thanks Baino and GM

    My idea of hell is being couped up in a crowded ward with the windows firmly closed. Not only is it stuffy and horrible, it’s positively unhealthy. When I was in the isolation unit, the lady between me and the window was terminally ill and felt the cold terribly. We eventually did a deal that every time she went to the bathroom, I was allowed to open the window for a few minutes of fresh air. One sunny morning I sneaked out through a fire door to sit in the autumnal sunshine but was spotted by a consultant doc on his ward rounds. The surgeon approached me with all his entourage in tow and announced that he thoroughly approved of seeing me outdoors. I guess he came from the old school of medicine 🙂

    Grannymar, we’re obviously two of a kind as I open the windows every day (even if only briefly on the coldest days) to circulate fresh air around the house, and it doesn’t make me very popular!

  10. Knipex says:

    Steph

    It may surprise you to know that up untill very recently (as in the last 12 months) it was firmly believed that the only way to transmit MRSA from a apatient to another was by hand contact. The role of the patient shedding MRSA onto their surrounding environment, or even onto items that they touched was described as negligable.

    Fortunately this attitude has now changed for the majority of Infection controll personel. This is due to the many studies that have been carried out over the last 2 to 3 years.

    There are many strians of MRSA and confining all MRESA infected patients to one room irespective of the strain they are infected with is downright dangerous but we are a country of old hospitals designed around the old system of open wards with minimal single rooms.

    Even worse is the fact that MRSA is far from the only HCAI spread this way and indeed the environment has a much bigger impact on the spread of C.diff, VRE, Acinetobacter, norovirus and others than MRSA.

    The problem is that the only way to resolve this issue is to close existing hospitals, knock them to the ground and build new ones. But we allready have bed shortages so this is not possible.

    The only solution remaining is to build new hospitals and sell the old ones to developers.

  11. Steph says:

    Hi again! Knipex

    Your comment explains a lot about my experience and I’m very glad to hear that things are changing.

    I fought my hardest to stay out of that isolation unit as I reckoned that my chances of ever shaking off MRSA would be severely diminished by the place. In fact, it turned out to be the reverse – in my 5-bedded bay, I appeared to be the only one ‘infected’ as I was the only one being pumped full of IV antibiotics. I felt very guilty being beside a terminally ill patient who I knew was merely colonised.

    Believe it or not, when I finally got 3 consecutive negative swabs I was transferred back into a normal ward to complete my treatment. There were two patients in the room who were early post-mastectomy. I felt very uncomfortable about this as I was still undergoing treatment for MRSA osteomyelitis and instinctively felt that I posed a risk to them. Despite not wanting to be transferred back to the awful isolation unit, I quietly pointed out my concerns to the staff and was immediately moved out of the room. Luckily for me a spare single room was available and my unrest paid off but I find it worrisome that my concern was so obviously justified. It’s hard to believe the confusion that exists out there in the area of infection control.

    I agree with you entirely about the need to build new hospitals. Unfortunately, our Government chooses to build only private ones!

  12. […] the MRSA isolation unit. I’ve already written about the slack infection control policy here in another post. This unit was everything I’d feared, and worse but after weeks of treatment there I did get […]

  13. Carter says:

    What does “A&E” mean?

  14. Steph says:

    Hi! Carter

    A&E is short for Accident and Emergency Department. Also known as Casualty or Emergency Room (US).

    In the large public hospitals in Ireland, all admissions (except elective ones) have to be processed through the A&E department. Even those patients who come into hospital regularly for treatment, still have to go through A&E to be admitted. It’s no place to be when you’re already immuno-compromised and vulnerable to infection.

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