I had the misfortune to be in hospital from 22nd to 29th December with a severe respiratory chest infection. Yes, to some extent it was my fault as I let it go too far before I called the GP out. I have to say that almost all the staff in the hospital who dealt with me, including the ambulance crew, A&E staff, medical assessment unit and finally the ward, from people who brought a cup of tea or cleaned, to the nurses, doctors and consultants were exemplary in their kindness and care.
But once I was in the ward, sharing with 5 other ladies all with different kinds of issues or infections, I became quite alarmed at how vulnerable I felt. As I was in bed 6, I was always last when they were checking BP, temperature and sats. So these instruments had gone around all the other patients and then risked bringing their infections to me as I saw no cleansing of instruments, or indeed nurses hands, between patients. The nearest WC I could use was unisex. It was always filthy, on the floor and on the seat. Not the hospital's fault but other patients. At least two visitors came into the ward to see other patients near me, bring with them full on colds and blowing their noses and sneezing.
As I was in hospital because my CLL means I have low defences, and was having difficulty with the respiratory infection (I had about 5 different antibiotics before anything started to make an improvement), I was getting quite alarmed that I was vulnerable to picking up something more from the sources I have mentioned.
I voiced (well, actually I had no voice for 10 days) my concern to the ward sister, and I have to say her response was immediate, and I was not made to feel uncomfortable about having complained. I was moved to a separate cubicle which they had thoroughly cleaned/sanitised before I moved into it.
Given they will isolate people with infections to protect other patients, I felt they did nothing at the other end of the scale to risk assess or protect patients with CLL/ compromised immune systems.
I would be interested to hear other people's experiences and thoughts on this issue.
Written by
holly2
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Sorry to hear you were in hospital over the Christmas period and hope you're feeling much better now.
Due to your post not being restricted to the community, I don't want to go into too much personal detail save to say that this was my experience in hospital last year and I had to insist on a separate room. When they took me to the main Ward with an undiagnosed but severe infection, the woman in the next bed had a bad chest infection and a lady opposite had a rash down on legs and I had no idea if it was contagious! The bathroom was also shared and not particularly clean. In honesty the experience and risks scared the hell out of me!
Fortunately I insisted and was moved to a separate room but found myself in the midst of desperately ill, demented elderly patients on every side and the experience was isolating (but safer). I then contracted a bad infection in my hand due to inadequate cannula care. I had a conversation with the Matron because I just don't think the nurses understood the risks involved with immune compromised patients at all.
However, I suspect the real issue is the construct of hospital wards and lack of availability of separate rooms. If there hadn't been a separate room available when I was admitted, I'm pretty sure I'd have remained on the main ward.
Holly, just an added point (having read your other posts), I'm particularly surprised you were put in this position with impaired neutrophil levels. It's crazy that you were placed at this risk to be honest so I'm glad they were able to see sense and make adequate provision in the end.
Thank you Newdawn for your quick response. I did wonder at the time if I was over-reacting or my illness was making me paranoid! So it is reassuring in an odd way, that you also had this experience. I intend writing to someone at the hospital (not sure who yet) to pursue the whole issue further. Surely, they must deal with other patients who are quite as vulnerable as I was and some kind of risk assessment should be carried out. Before I was found the cubicle, they said they would set up a barrier system whereby any staff would have to put on aprons and gloves before dealing with me, and they would provide me with a dedicated commode. When I was moved to the cubicle, I did use a nearby WC, but it was ladies only and not as frequently used as the other had been, and I had access to disinfectant wipes, so life was a little easier then.
I also was surrounded by patients with mental health problems and dementia and that in itself was a very worrying thing. As I had completely lost my voice, I would not have been able to shout or scream out if I had been in danger from anyone. This did also worry me somewhat when I was in isolation but overall I felt much safer and was not too far from the nurses desk in the corridor.
I have been home 2 weeks and still recovering. I have asthma as well as CLL so that has complicated things somewhat. But I am getting there ... being back with my little dog is a big tonic!
I can completely identify with your experiences. You weren't being paranoid or over-reacting at all... I think the needs of folk like us are often overlooked in hospitals, and our vulnerability is not taken seriously.
I was in hospital recently (surgery for ruptured spleen followed by chest infection). During my 12 day stay, I was moved between five different wards, and they varied enormously. In two of them, I had an individual room (not for my own protection, but because I was suspected of having something contagious myself). In the other three wards, I was in a bay with 5 other ladies. I can identify with all you said about that setup, though usually (not always) our toilets were clean.
It is very encouraging to hear that the ward sister responded so well to your request for better infection control. It's often hard for patients to express this need themselves, especially if a separate room is needed. I think it would be better if the doctors would ask on our behalf... They have a fuller understanding of our immune-compromised state.
I found the single rooms were a mixed blessing though. I felt a bit isolated. Staff didn't come in unless they really had to, because they had to wash hands and put gowns on. I wasn't visible from the nurses' station. And I missed the companionship of the ladies in the 6 bed bays. They were a friendly bunch and there was a supportive sense of camaraderie amongst us.
I still have the leaflet I was given when I went home, asking for feedback about the standard of care I received in hospital. I keep looking at it, wondering how to express all the things in my mind... I know I must be very selective and objective in what I say. I believe it's important that we do give honest and detailed feedback, for the sake of other patients as well as ourselves. But I still find it hard to get round to doing it...
I'm glad you're safely home with your little dog now, and are on the mend. I know how chest infections can take a long time to clear up, especially with the complication of asthma. But you say you're getting there... which is great.
Thank you Paula, our experiences seem very similar but I was lucky in only staying 7 days. I did complete a survey form before I left listing all the issues I was concerned about but also complimenting them on the kindness and care I had received. I definitely intend to formally follow all this up but am waiting till I feel a bit better so I can concentrate on what I want to say.
Am seeing my GP tomorrow but only have a 10 minute slot so won't really have time to ask his opinion.
I agree about the need to feel better before following this up, Holly. Don't leave it too long though... My example is NOT one to follow, because it's now about 11 weeks since I came home and the feedback form is still sitting on my desk...
Like you, I experienced a lot of kindness from the hospital staff. That was very precious and I definitely want to express that in my feedback. Little acts of kindness mean a lot, especially when we're in such a vulnerable situation...
I do hope you continue to improve now you're home.
I don't think it matters how much time passes by as the issue is still relevant and you (as I do) need to feel well (mentally and physically) before deciding how to answer it. These things are not easy to tackle and how we do so can impact how it is received. It needs to be written in a way that will be received positively not put the reader on the defensive.
Saw doctor today and was told to give myself another couple of weeks to recover so will probably wait at least that long before trying to take this further.
Thank you for your comments, hope we all have a healthy and happier 2016!
You're right Holly. It's so important to express our feedback in the right way, if our comments are going to have a constructive effect on those who read them...
I'm afraid that's why I keep putting it off, even though I am fully recovered now and as capable as I'll ever be, of giving my feedback. But I'll do it eventually.
Felt exactly the same about the single, very lonely room I was in. Safer for sure but like you Paula it was lonely. Although as Holly has said you cannot fault the staff.
Thankfully Holly , you appear to be getting better. Please do still take care though. Personally I think you should send your concerns to the Chief Executive. Nothing like starting at the top. You may be able to get procedure changed for immune compromised patients in your hospital, which would be great. Or at the very least start the ball rolling. I am sending my very best wishes for a speedy total recovery.
Thank you Sue, I appreciate your best wishes. I am feeling better today, but still tired after not much activity. Breathing is better which is a blessing. I don't have to sleep sitting up any more!
I think you are right about finding someone at the top to write to, and I am tempted to copy it also to my MP who is very good at acknowledging letters from her constituents.
What a good idea Holly about the MP as well. I am really pleased you are feeling better but the caution is still there, take care, and take it easy. Have just come back from walking my little dog and its freezing outside. Do you have someone to do that for you or an enclosed garden. Best to stay in warm. I believe it takes quite a few days to get over a hospital stay and to catch up on all the missed sleep. Because the noise never stops does it., and those squeaky trollies. Take care and more best wishes are sent.
Doctor seen today and says to give myself another couple of weeks to recover. But I was naughty and took my little dog for a walk just locally around the roads, but the wind was quite cold, not good for the lungs! Still I have survived and my dog enjoyed it! It is quite nice not doing some of the self imposed chores I usually do. I am quite enjoying this recovery time!
If you have another outing (and I'm sure you will) try and cover the nose and mouth outside so that as much as is possible no cold gets inside you. Not a medical person I'm afraid so this is the best advice I can give.
Poor you, oh dear what a terrible experience for you!!!!! You MUST write to the C.,E.O to help other 'victims' who will come along.....
My husband had a similar experience about 18 months ago, he had pneumonia, neutrapaenic and suspected to have sepsis. not a good place to be admitted in the middle of the night to a 6 bed ward very cramped, with at least two men coughing and sneezing. visitors who came in like bus loads, like five plus 2 children at the next bed. As soon as his temp went back to normal, I insisted he was discharged and given oral antibiotics, I had a real battle, but I kept saying he would be safer at home. they put the delivery of prescriptions into 'slow motion' we went home, I rang every hour until they said the prescriptions were ready and then I went back to collect same. We will never go there again, next time?????? I will drive him myself to the next nearest hospital about 30 miles away, which is where he has cll checks and we know (as he has been in there with sepsis) that they ARE sympathetic to the problem.
I do hope you are now feeling much better, it is lovely to be home and with your dear little chum!! b.w. hazel
It is so interesting hearing of other people's similar experiences and I am glad that I was not over-reacting when I took it up in the ward. I was certainly luckier than your husband when I was moved to the single cubicle. My hospital is meant to be a so called super-hospital so I don't know what others are like! At discharge, I was given the option of staying longer, the consultant said "it is up to you" if I went home or not. I knew going home would be best, at least to get a decent clean shower and wc! My medication was all ready for me at discharge without any hassle, so I was more fortunate in that. It is great to be home, catching up with all the miserable story lines in the soaps shown over Christmas!
The issue of vulnerability to other diseases while being hospitalized is apparently a universal problem. I live in the US and was hospitalized for right atrial flutter which required an ablation. I was put in a two person room with a patient that was recovering from an amputation due to MRSA. When I learned this from conversation with my roommate I went to the nurses' station and told them I was immune compromised and the nurse on duty immediately moved me to another room. The message from our experiences is for patients to be alert to their own situation and speak up for their health needs when placed in danger.
Yes, you are definitely right about having to speak up for yourself. Trouble is when you feel incredibly ill, you are not always in a position to do so. It was not until I was actually starting to improve that I became aware of all the issues and risks I was facing. At least it is good to know that for you, and myself, once we raised the concern, we were listened to and actions taken to improve our care.
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