Hi, I am a nurse working in a general intensive care in the UK and I am interested in finding out how patients and their families felt when/after being transfered from the ICU to a general ward. If it was a negative experience what do you think could have made the transition a little easier? If it was a neutral or positive experience what made it so? I am hoping to try and improve the transition to the ward for ICU patients and their families and would be keen to hear from anyone who has had this experience. Thank you.
ICU to the ward transition: Hi, I am a nurse... - ICUsteps
ICU to the ward transition
I caught C Diff while in ICU, and was moved into a room with no other patients, just a nurse sitting beside me all the time (how bored he must have been!) Then when I was well enough I was moved to another room by myself with another nurse who looked in every few minutes. It didn't really make much difference!
2 days post coma i was moved to a general ward and pretty much ignored until I discharged myself. that ward seemed to be for elderly females with dementia and I felt I was there to keep an eye on the other patients eg using the bedside buzzer to call for help for these ladies when they get into distress etc. A negative experience for me I'm afraid.
Thank you for sharing your experience and I'm so sorry to hear what you had to go through. It does seem that we don't effectively communicate with ward staff in regards to what a patient on icu has been through. As I'm sure you're already aware they are very busy on the wards, not that that makes the experience any better for you. Do you think there was anything that could've been done to improve things? If you were not told what the ward could be like, would being given that information have helped? If you were monitored constantly up until you left ie blood pressure, heart rate, oxygenation etc would being monitored less frequently helped? Would being visited by familiar staff? The ward staff being more aware of your needs? Sorry for all the questions and thank you for taking the time to reply.
I'm more than happy to answer your questions
I feel that being visited by familiar staff would have been extremely helpful, I wasn't aware that I was still having hallucinations/paranoia etc while on the general ward plus no family/friends being there for support. I still don't know what was real or psychosis 😐 (this was July 2014).
Hi, sorry to intrude on your discussion but I wanted to say that one of the things I have done with my Dad who is struggling to work out which memories are real and which are false memories is to write in a notebook that he refers to when he is confused, a list of the very vivid memories he has, but which are not real and a list of things that genuinely have happened - his examples of false memories include really detailed memories of having interviews for jobs during his stay in ITU (he can name the location, city and company), being made to sleep on the floor with hundreds of children in a basement at the hospital, people taking his blood and telling him they are going to sell it on the black market and being attacked by nurses with knives during the night. Now that he has the book with the list, he seems to feel more comfortable in understanding that his brain is filling in the gaps with a jumble of memories that don't belong together in that time period or indeed have been completely fabricated. Good luck in your recovery...
Some units, including where I have worked have introduced patient diaries. This is for anyone to write in. On our unit the nurse caring for the stormy will write an entry bout what has happened during the shift. Relatives can write entries, physiotherapists, speech and language. So hopefully that will be helpful. I'm glad your dad had you to do this for him.
3 years ago I was in ICU. I was subsequently transferred to 3 different wards before I was found a permanent bed. Having being told absolutely nothing about the after effects of being in ICU, I was horrified to discover I was unable to even pull myself up in bed.
The first morning in a ward, a nurse asked me if I wanted a shower. I said 'yes please'. The nurse said 'I will show you where it is' and walked away. When I did not follow she came back, I explained that i could not walk unaided, she sighed and went and got a wheeled commode. With this she took me to the shower room, she then stood in the opposite corner to the shower emphasizing more than once that she did not want to get wet. I was left to my own devices. Over the next 5 weeks I only had strip washes, (sitting down of course).
For the rest of my stay, the only time I saw a nurse was to take me to the toilet, or for a drugs round or meal-times. It was obvious from their attitude that they had no idea that I had come from ICU and the effects it has on a person. Nobody told myself or my husband anything about the after effects of being a survivor of ICU and apparently the staff on the wards either.
What do I think will help improve the situation? Communication & Training.
Thank you for sharing Lacemaker, I am sorry to hear of you negative experience but I think it's important so that we can learn from our mistakes. It's sad to hear that you were not given any information at the very least a booklet from icu steps should be the minimum.
You said communication and training, if I could be annoying and ask you specifically which aspects were lacking ? From your response I'm guessing communication from intensive care to the patient in terms of what to except on the ward and what are the possible after effects of an icu stay. Then in handover to the ward regarding the physical and psychological effects of a patient being in intensive care. An idea I had considered was to have a link nurse on each ward who would receive training in regards to rehabilitation of critical care patients.
After 3 weeks in ICU I was transferred to a general ward. I knew that I was getting better so the third world conditions did not phase me but had I been really ill I would have been frightened by the lack of routine / haphazard drug regime / poor communication between staff and patients.
I was in ICU then HDU before being moved back to respiratory ward (11 moves in all in 6 weeks!). I had been on a ventilator and literally couldn't even stand let alone walk. Like others here I was made to feel like I was a real nuisance and when I tried to explain to various nurses/HCAs that I had been in the ICU I was met with blank stares and a "so what" attitude. They didn't seem to have the first idea what it was like for patients post ICU which really surprised me as I surely can't have been the first one! I couldn't get out of bed easily to go to the bathroom and when I asked for help with washing I got two very rude HCAs on two separate occasions being very nasty and one even rather physical with me. I was still suffering the effects of all the drugs I'd had and was feeling very vunerable and tearful so didn't really stand up for myself like I would normally do. If it hadn't been for one little gem of a HCA who used to work nights (not every night unfortunately) I don't know what I would have done. She seemed to be the only one who could understand my limitations and helped me so much without moaning or making me feel bad. What didn't help as well was that I was put in a side room on my own so I had no contact with other patients. My family would come in every day but obviously that was only for a few hours. The rest of the time I was alone and it was only when I was moved to a ward with others two days before I came home that I realised how much better it would have been to be with other patients. I started to feel "normal" as soon as I went into the ward with others and not so isolated. Thank you for bothering to ask these questions, it is nice to think that people will hopefully have better care in the future.
Vianne, thank you for sharing your experience and in sorry you were made to feel like that. Some people prefer being in a side room and others do not and the only way to find out is to ask for the persons preference. Unfortunately it's not always possible due to the limitation of available beds but there should always be scope to swap with a patient who would like to be in a side room. However, there is no excuse for the attitudes towards you and I'm glad you had at least someone that seem to understand where you were coming from.
It's so important to try and make people's journey in hospital a more acceptable experience as the after affects last years if not a lifetime. We need to start getting this right to begin with and then hopefully the after affects will not be as profound and long lasting.
My husband was in a coma and on life support for almost 3 months. Once he was able to be moved he was transferred to a different hospital and his treatment there was horrible. They didn't feed him enough, we had to bring him in food or leave him money and he had to find a way, in his wheelchair, to get downstairs to the fast food to buy food. He ended up signing himself out, with his feeding tube still in and going back to the other hospital to have it removed, as well as the pik line.
He was just starting to walk when he left the hospital and had a huge bed sore that had to be changed daily.
Thank you for your response, from other people I have spoken to it does seem to be common that the ward nurses have no concept of what a patient on intensive care has been through, hence the term icu survivor seems particularly apt. Do the ward nurses not realise because we don't communicate that effectively enough or that it's not taken on board or both I think probably the latter. Verbal hangovers don't seem to be working as information gets lost. Do we need to formulate a care plan which may at least act as a reminder of the possible limitations that can be caused by an icu admission?
Sorry for my long-winded reply.
Yes definitely.. a care plan on transfer from ICU should include a summary of time events treatments in ICU .. written in both clinical and non-clinical descriptions clearly including likely and possible limitations.
Shift handovers need to include reminders of limitations in the care plan and any significant progress, events or barriers being experienced by the person in care.
After bowel cancer surgery and resection i had anastomatic leakage, severe sepsis and multiple organ failure, placed on life support in ICU.
I was incredibly lucky with my survival in ICU, the dedication of ICU specialists and the fantastic care I received when transferred to the specialist surgical ward.
I spent 2 months in hospital. The nurses and unit managers had an obvious culture of cooperation, good handovers with patient knowledge and awareness.
Despite their huge workload they remained professional, gave me real personal care and attention. They had a good sense of fun and humour and knew when to use it, even in really difficult times.
The nurses were obviously well-briefed in their handovers including when I was having a really shity day and had hit the wall emotionally mentally or otherwise. They respected me and gave me space when I needed or extra attention and care.
I went back to the ward last week to visit a friend who has just had the same surgery as me and was on the same ward. I had told her before surgery that she will be in the best care and surrounded by angels.
It was the first time in over 3 years that i have been back there to the ward. Many nurses all remembered me, gave me hugs, and one even said yes I remember you, you were in room 49 weren't you... yes I was ! That blew me away.
They had been very thorough in handovers and never lost sight of the person they are dealing with or too clinically distanced.
From the horrible stories i see here of poor treatment and bad experiences of other people who have survived ICU, I feel the knowledge and understanding of nursing staff and doctors is lacking the humanity, dignity and personal care that I was given.
Maybe nurse education and training would give great insight if it included a period of true isolation without tv or phone, no visitors, some medications with hallucinogenic effects and definitely include the experience of being catheterised, also tubes inserted orally and for connection to a mechanical ventilator then removal of all insertions. A little experience would help give appreciation, insight, better understanding, empathy and more caring attitude.
Attitude, ward culture and quality of handovers are so important
The main thing that has to be done, and isn't, is telling the patient what to expect with regards to the terrible hallucinations. Even though the patient might not be able to understand at the time, as soon as they can, then talk to them about it. They are terrifying and I still suffer to this day and that was 6 years ago. I 'went to Heaven' too. My experiences felt real to me as they came back to haunt me as vivid flashbacks after I left hospital. Don't be afraid to tell your patients what they MAY have been through. When you get the time to that is! Don't let the patient wait until they have left the ICU before having a chat. Good luck
Audacity, I agree.
The nightmares and hallucinations are the worst part of ICU. Even worse than gagging on tubes down your throat and the terrible thirst.
The ventilator and the thirst, we can understand are necessary. But surely they could change the drugs that cause the nightmares? If they really understood how bad it is every scientist in the world would be working to change things.
Patchworker, The drugs do have all sorts of horrible side effects and its wasn't till fairly recently that it became common practice to keep the sedative drugs used to an absolute minimum while ensuring patient safety. In some units physical restraint is used rather than chemical, having never seen physical restraint used I'm unable to compare.
Drugs are usually changed depending on the length of time spent on the ventilator. Other factors play a part in the chosen drugs used for example how well the kidneys are able to clear the drugs from the body, sadly it also comes down to cost.
I am just about a mth out ic after been in with pnemonia if spelled correct what a horrible experience i was left without water when i had tube down throat so still not able to speak which was so frustrating so had to write down what i was trying to say sadly most the nurses didnt seem to care but luckily 2 of the younger nurses were brilliant its the only time i felt safe known they were on shift ,i also rbr feeling staving the only time i knew i was getting fed threw my drip was if the 2 younger nurses were on shift,i was in nearly 2 wks in ic ward so knew every nurse whether they were ok or didnt care.i also never knew of the side effects nightmares after ic until reading all these comments i have spent wks trying to piece memories before hospital etc together thought i was going mad ,the second ward i went to with own room tv was great and finally some peace to sleep and get space from ic as after a few wks is so draining and obviously not nice especially when needing to rely on a good nurse to do basics sorry for ranting but just had worst ordeal ever and was a relief to come across this and we can actually talk and get it of our chests and hopefully there is positive changes so no othet patients need to get neglected.
The other thing also is the patient who has had an NDE, as I did. The nurse who came to check on me before I was discharged asked if I had had and 'experiences'. I told her that I had seen 'Heaven'. This did not shock her. I also told her that I had seen EVERYTHING that the ICU staff had done to me during resuscitation, and I mean EVERYTHING. I could even recount what was being said. I also told this particular nurse that I knew her colleague had talked about being pregnant. Which was impossible because I 'wasn't there' so to speak! The poor girl nearly dropped through the floor. I am not a religious person. And I feel embarrassed mentioning it, but I knew that I wasn't on Earth. It's those 'experiences' also that need to be mentioned in the moments you have with your patient, because it's those 'out of body' aspects of ICU that are definitely the weirdest! For the sake of the patient's sanity, more than anything. The staff I had looking after me were so busy that they didn't have time to stop and 'specifically' stop and talk, but maybe during the scheduled time that you have with your patient, ICU 'experiences' could be talked about then, killing two birds with one stone so to speak. You do a wonderful job and without your dedication I, certainly, would not be here.
Thank you for your response. Hopefully someone did speak to you about what you were going through and possibly the reasons why. Was a patient diary started? If so, did you find it useful?
The ICU Specialist Consultant visited me on the ward several times as he was trying to identify the location and nature of a persistant infection I was experiencing.
He was also reviewing my pain medications. He was easy to talk with, nurses on the ward all spoke highly of him and liked him. I think they learnt a lot from listening to and observing him dealing with patients.
Your suggestion of a link nurse is a really good one and would help ICU patients and nurses on the ward to understand a lot more.
Diaries have recently been introduced in the ICU where i had been. Another positive and helpful step.
Hi, I wet into Llandough for an operation in my back, my artery was severed and had to have life saving surgery. I was taken to icu induced coma, apparently I had breathing issues and was teansfeeeed to the Heath icu, after being in the coma for 13 days, totally confused and extremely scared I was told o was being moved to high dependency ward, I stayed their for 2 days and then taken to a ward. I was them told I had mrsa and was taken to a room in my own. I was extremely ill as I had pe, clots on both lungs and was on a mask for most of my 2 mi th stay... I think having a diary would have been extremely useful to me, even now I ask my husband questions about my stay, he will not talk to me about it, he says he went through hell and doesn't wasn't to go through it again by talking to me. I have ptsd, anxiety attack and have had counselling along with cbt, however I'm still suffering in silence.. I really hope that things have improved for patience who are now I my position, I have to say the nurses played a major part in my recovery, I struck up a bond with quite a few of them and I will never forget them. Hope this helps and I'm happy to answer any questions you may have. Kind regards
Do you have an icu steps group attached to the hospital you were admitted? If so, they could be a great support for you and to share experiences with people that understand. Usually there is a consultant, nurse and possibly a physio present that would have possibly be involved in your care and should have insight into your experience. I am happy to talk through anything if you would like but I can only offer objective advice. Do you personally think that if things had been done differently then the problems that you are now facing would be less marked? If so, what could have been done differently?
As I read all these excellent replies, I am crying. I have been ventilated on 10 separate occasions due to severe asthma. I can identify with so many of the situations so eloquently put by the others on here.
The transition from ITU to a main ward or side room is really traumatic and scary. ITU itself gives you so much support and time that it is a shock to be marooned almost, and be one of 26 patients on a ward. It is even harder in a side room because you cannot see what else is going on and you feel so alone.
When you ask what would help, I think training would be a great start, for all staff. Better ITU to ward liaison. Being involved in the transfer. Being made aware of the ward situation and what you can expect as part of the handover would be good. The ITU staff could do a better and more thorough handover highlighting areas such as being unable to stand/wash/dress/etc, and awareness of how ill you have been and what you have been through ... All good. I like the sound of visits from ITU staff (if they have time) on subsequent days following transfer. I once had staff come and see how I was doing - and it helped so much.
You really get to know the ITU staff and being left in a main ward possibly still having hallucinations and experiencing the remanence of such powerful medication - it can continue to add unnecessary fear/confusion on top of trauma. And it can be dangerous - causing bounce-back and a much slower recovery ( I fell off a commode once following a 16 day vent managing to sprain my ankle! The staff thought I could be left to transfer on my own...)
It is only since my local hospital has started a one off consultation with an ITU nurse (following discharge) who kindly explained so many things that I have suffered, that I have been able to come to terms (somewhat) with what I have been through. Please do not answer estimate how much these experiences can hurt.
My heart goes out to all those who have suffered so much because I know a little of how that feels and I hope you will all be ok.
Thank you for asking because so many don't.
Feel free to email: sianthomas98a@gmail.com if I can help.
That's great thank you so much for the insight and suggestions. Do you get as many consultations as you need?
The wards are so so busy and so over stretched that when we handover they can be distracted especially if we, in icu, use terminology that some nurses on the ward not understand. So much important information is lost during verbal handover so may be a care plan and a nursing discharge summary may help?
Thank you for your email I will be in touch
I wonder how many of us are crying, for ourselves and others, as we read and write these posts?
All this is bringing back so many memories.
I was in a room with bright lights, several nurses and a doctor. I had just woken to find something over my mouth and down my throat. I was horrified. I couldn't talk, so I waved my hands about in terror. The Doctor looked at me and said to the nurses, "it's not often we get applause for our work, is it?". He then gave an ironic little bow.
Fortunately at that point I was given more drugs and slept again.
But how could he make fun of my fear and misery?
Hi hd,
After a month of sedation/ventilation in ICU after suffering a double pneumonia, ARDS, multi organ failure and a pulmonary embolism I was transferred to the wards.
I had lost 3 1/2 stone and was just about able to roll myself over in the bed.
The first meal time came and it was sandwiches, I couldn't reach them but was to tired and weak to ask for help.
The nurses raced around handed them out and shortly afterwards collected them up.
To my amazement there was no help or concern that I hadn't touched mine.
That night the person next to me died and his body was removed, the curtains were pulled around me but I could hear the chat and see their creepy shadows.
I was in the so called High care room where 1 nurse would run in and out about once every hour to put oxygen masks back on patients that kept pulling them off hence setting off the alarms on the machines that were buzzing all night every night.
Sleep was totally impossible and after 3 days and nights I was returned to ICU in a far worse state than when I left.
I remember leaving the ward feeling so happy that I was heading back to ICU where the care was amazing and back to air conditioning where I could breath. The wards were so hot and stuffy, I know had I remained there I would not be here to be writing this now.
They kept me in ICU for a total of 2 1/2 months when I was just about ready to face the wards again.
On my return things were different, there were more nurses, I had a visit from the amazing outreach girls every day who made sure I was being cared for correctly.
I had one very bad experience from a nurse who told me I was faking it and treated me very roughly when my oxygen supply was not coming through due to a fault in the wall mounted connection point. The outreach girls came to my rescue then and the nurse rightfully got into a lot of trouble.
If it wasn't for outreach life would have been a lot harder and I may not have got out but after a total of 4 months that day finally came.
I could just about walk to the toilet and back by then on oxygen thanks to the amazing work done by the nursing team and physio terrorists.
On the whole the nursing care was very good with very few exceptions but without the help and support of my family as well I may not have got through it all.
I was very lucky to have had daily visits from friends, family and the outreach team throughout and know it would have been a very different outcome had I not had their support.
Tony
Gosh that's awful. Nurses that have reached a place where being cruel to valnerable people in their care should find a new profession. I'm glad to hear your second experience was improved to the first. The outreach service is fantastic. I believe it was originally set up to support patients recently discharged from icu. However they tend to be involved seeing patients in a&e assisting in their transfer to icu or deteriorating patients on the wards, therefore leaving a unfilled gap in care.
Yes definitely.. a care plan on transfer from ICU should include a summary of time, events, treatments in ICU .. written in both clinical and non-clinical descriptions clearly including likely and possible limitations.
Shift handovers need to include reminders of limitations in the care plan and any significant progress, events or barriers being experienced by the person in care.
After bowel cancer surgery and resection i had anastomatic leakage, severe sepsis and multiple organ failure, placed on life support in ICU.
I was incredibly lucky with my survival in ICU, the dedication of ICU specialists and the fantastic care I received when transferred to the specialist surgical ward.
I spent 2 months in hospital. The nurses and unit managers had an obvious culture of cooperation, good handovers with patient knowledge and awareness.
Despite their huge workload they remained professional, gave me real personal care and attention. They had a good sense of fun and humour and knew when to use it, even in really difficult times.
The nurses were obviously well-briefed in their handovers including when I was having a really shity day and had hit the wall emotionally mentally or otherwise. They respected me and gave me space when I needed, or extra attention and care.
I went back to the ward last week to visit a friend who has just had the same surgery as me and was on the same ward. I had told her before surgery that she will be in the best care and surrounded by angels.
It was the first time in over 3 years that i have been back there to the ward. Many nurses all remembered me, gave me hugs, and one even said yes I remember you, you were in room 49 weren't you... yes I was ! That blew me away.
They had been very thorough in handovers and never lost sight of the person they are dealing with or too clinically distanced.
From the horrible stories i see here of poor treatment and bad experiences of other people who have survived ICU, I feel the knowledge and understanding of nursing staff and doctors is lacking the humanity, dignity and personal care that I was given.
Maybe nurse education and training would give great insight if it included a period of true isolation without tv or phone, no visitors, some medications with hallucinogenic effects and definitely include the experience of being catheterised, also tubes inserted orally and for connection to a mechanical ventilator then removal of all insertions. A little experience would help give appreciation, insight, better understanding, empathy and more caring attitude.
Attitude, ward culture and quality of handovers are so important
Thank you for your response. You would hope that empathy would be expressed seeing as the nurses are present during a patients suffering, but sadly that doesn't always seem to be the case.
We tend to become desensitised to the torturous interventions we put patients in our care through and we could all do with a jolt of reality.
Hello and thank you for your response. The reason I posted this question is due to the fact that unfortunately there have been so many people, like you, that have had such horrendous experiences. I am hoping by sharing experiences and suggestions to improve practices, at the very least will give icu survivors a voice and we as healthcare employees can strive towards improvements in patients care. Having a son that suffers from PTSD I know how disabling it can be and this has made me very determined to try and improve our practices. So I thank you all so much for being brave enough to share such personal experiences.
Hi I was moved from ICU to coronary care where I was not allowed to move freely as I still had tubes and things attached to me! After being in there for a week waited on hand and foot I was taken to a step down ward at midnight and left! Desperate for the toilet I rang the buzzer a nurse came and asked me what I wanted? I need the Loo! off you go then!! But I haven't walked that length on my own for a while!! Then this will be the first time and walked away!! I was in tears!! It took me ages but I did it but felt so ill 😟 If only nurses were informed patients from ICU and special care units haven't been walking by themselves at all and they would need help to walk the long stretch to the toilet😟
I was in ICU for 5 weeks last year for ARDS, I spent nearly 3 weeks on ECMO , had a trach and on a ventilator, I also had kidney failure and was on dialysis for a month.
Waking up in ICU was the worst experience of my life.
Confusing and terrifying especially when you can't speak and then discover you can't move .....couldn't even lift a finger.
I eventually got transfered out of the hospital that I had ECMO at to the local hospital ICU (local...still 60 km away from where I lived)
After 3 days in ICU they then tod me I was to be transferred to Nephrology ward.
I was ecstatic to be transferred out of ICU , to me it was a step nearer to going home!
Some of the nurses , it seemed, we're not aware of my case.
I still hadn't walked or even stood up for over a month , physio in ICU had gotten me my motor skills back but I was still very weak and shakey.
My first lunch was bought into my room and just put on the table then the nurse just left, leaving me laid in bed wondering how I'd get over to the table to eat.
However in general my care was good on the ward and for me the move to the ward was something that showed me something positive, freedom and closer to getting home!
My daughter who has learning difficulties is waiting to go to the ward after 9 weeks in ICU
Thought it is a great step nearer to going home ,but will miss the constant attention of those special guardian angels ,the nurses on ITC
I hope it is easy , just got to wait and see,hope that the ward will be as accommodating as ICU HAS BEEN.
Well aftercare was pretty ok where I was!!! From what my family told me the ICU nurses were really helpful while I was there!! Although we all thiught I was moved to a ward to soon (still couldn't stand or had any physio and still hallucinating) but a couple of months later I got a letter asking me if I wanted to attend a new ICU aftercare program once a week, for 6 weeks, was a tiny bit of excersise then every week was different, got to speak to the doctors, the amazing nurses, staff, physiologists, and it wasn't just for me.....it was for the relatives too! My mum came a lot with me and understanding what I had felt/went through and also speaking to other relatives really helped her!!! And my partner too, just can't seem to find a lot of support groups now for the families etc now we have done that!! Got a feeling my mums 'coming down' from all the drama at the time (if that makes sense!) Any advice for her is more than welcome! xxx
Thanks for being an amazing nurse!!!! xxx
And p.s my ICU nurse phoned and made sure I knew the ward and knew the nurse she was taking me too!!! That helped too!!! And that they discussed the hand over with me xxx Coukdnt fault my treatment!!! Even if I prob didn't see it at the time xx
Hi there, just seen your post and I though I would share a very current experience. My dad was admitted to ITU on Feb 8th with severe sepsis, double pneumonia and 3 days later, acute kidney failure - he spent 1 month in ITU, before being transferred to a renal unit at a hospital about 40 miles away, we (and he) found the transition very hard, although we had been spoken to by ITU extensively about the step down in care and how difficult we might find it. He was given a call bell which he was unable to use due to muscle degradation and often left on his own for very long periods of time. For me, having sat with him 12-14 hours a day, it was also very hard to only be allowed to visit him for a few hours late each afternoon during ward visiting times. The ward is massively busy and some things such as mouth care, catheter bag and tube changes were missed, sometimes for days at a time, after a few days he developed a significant GI bleed and we had to transfer back to ITU in order to stabilise him again. One of the hardest things for him is that he is still nil by mouth and massively thirsty, and as he is the only NBM on the ward he is having to watch others drinking and eating all day - he's also been given a cup of tea and offered food more than once - which worries me greatly as he has no safe swallow reflex. I think the main thing for me is that whilst the ward is clearly best placed to cope with his renal problems, it appears that they don't have the time to fully understand the broader context of his illness until now and I don't feel they have the time or experience to help him with all the consequential extra care needs he has as a result of the prolonged ITU stay. We have little choice as to where he is cared for right now due to the kidney failure but I am worried that his wider care and rehab needs such as physio and the phycological impacts of being ventilated and unconscious for so long are not being fully addressed. I understand the limitations of funding and staffing, but I wondered if perhaps a period of ITU outreach handover or even just additional training for those wards that frequently receive ITU/ICU long term patients would help?
I remember very little about my transfer but my experience in the finedon unit in Northampton general was amazing. I had my own room, round the clock care and an excellent team working on me. I was in ITU for 2 weeks in Feb then on ward for 3 further weeks on dialysis. I think I was very confused when I awoke and tried to pull my dialysis spikes out of my neck and walk to the loo despite being catheterised. Apparently my first day awake I was a complete arsehole to my family but the second I was wonderful xx
Yeah was on a ventilator. I had great nurses and had my own room
Hi, as we live in Spain and my partner was in ICU in Spain I thought it might be useful to have a different cultural view on transfer from a ICU to ward? We were lucky/unlucky as the case may be in that on transfer Andy had Cdiff again, this delayed his move but only by a day! The staff from ICU liaised with the ward staff and all felt that 8 weeks in ICU had been long enough and to enable his transition more quality time with family and friends would be of benefit, a two bedded room was used solely for Andy and I stayed with him the whole five days on the ward with the nursing staff just entering his room to do his obs? This enabled me to help him through the difficult adjustment period going from intense observation 24/7 to virtually visits for obs, also to help with reality checks I.e his journey as I now know he calls it ( which to you and I are his 8 weeks spent in an induced coma) it may have been more by good luck than good management but the gap filled by myself and friends during that transition period proved invaluable! We were fortunate that in ICU we had a forward thinking team that were open to suggestions! Trying to ween Andy off sedation was proving very difficult especially as there was a language problem! We had a meeting with his team who against protocol relaxed the rules and changed the visiting times for me, this enabled sedation to be reduced more slowly and me to be there to reassure Andy as to what was happening! Instead of two 1/2 hour visits a day Inwas able to goat 4pm and stay till 9 pm which enabled quality visits! I will never be able to thank these guys enough for all they did, I know they say it's their job but they gave it above and beyond! It is just a shame that when the patient leaves ICU they and their family are then 'on their own' after care is poor with little or no thought given to their mental health after such a trauma! Maybe when the transition is taking place it would be a good approach to use a multi- disciplinary team as well as family to follow this through! Hope this helps!
Lynn & Andy
Oh Boy it took a week or so to "come down" once out of ICU and on a ward. I was out on manoeuvres, being visited by pop stars and telling my husband all sorts of odd stories. I was in Scotland one minute and New York the next, I even went to a "place" where you could choose what the theme would be, I choose the Welsh Sea Side resort option. It has taken me 19 months to "unravel" my head and know what really happened (Diary kept in ICU was invaluable) I can now have a little giggle to myself.
It would have helped if someone had explained this all to me along with the paralysis in my hands and hair falling out etc.
Luckily this condition had been explained to my husband but some of my other visitors thought that I had suffered a stroke.
My experience was all a bit surreal . One minute I was being brought out of a coma , then two nights I think and I was on a ward.
I was given food to make sure it was going in my stomach not lungs and then whizzed into a private room . When I got there I was very very grateful but I could not really feed myself and was just shell shocked . I was given a coffee (don’t like tea) and some dinner . It was really really weird . Fortunately I had my husband to help me . I couldn’t fathom it ! Maybe that’s the best way.
I’d like more. Support out of hospital . I fell very on my own and my lovely family struggle with me a bit . It’s been 6 months but I don’t feel good . I’m still me but different.
I do also think it depends on the individual . I was treated like a celebrity . I had people from ccu coming to the ward to see me and also the different staff wanted to see me before I was discharged . I laughed a lot . But that was just me.
I have found all these so hard to read, & can identify with so many of the experiences. I was in ICU 11 days & remember very little of that time. Friends & family said the care was amazing. I went onto one ward for one night until there was a bed in the proper place, & was virtually ignored. I was very weak & confused. Then I was transferred to another ward for 2 weeks. I don't really like to remember that time. One thing I would say - I remember a very nice doctor coming to tell me what had happened to me (Sepsis) & how poorly I'd been, but I couldn't really take in what she was saying. It would have helped me to be told that info more often so that I could understand. The nurses were hugely busy & all of us waited ages for a response to our buzzer.
After 2 weeks I was transferred to a local community hospital for rehab. That was a different environment altogether. That was where I was told about ICU Delirium. The young doctor who came to my house when I was so poorly, came to my bedside & explained how I was when he came & what had happened after that. He told me about the delirium, which I found so helpful as I thought it was all real. I was so grateful for the time he took with me. He also explained the discharge letter! The nurses there oftens talked to me about the delirium & I was able to tell them some of the things I'd seen & realise it was all normal. That was really helpful.
I did have a patient diary from ICU but I had trouble getting hold of it. Eventually I emailed the hospital's patient liason. When it eventually did come after I'd been home a few weeks, I found it hugely helpful & I was able to make a timeline of what had happened when, a few months later when I had some counselling.
I went back to ICU a couple of months after I came home & found that very helpful. I recognised the cleaner! She was dusting the doors exactly as she was in one of my deliriums! The nurse at that meeting said they were trying to get a coffee morning going for ICU survivors but I haven't heard any more about that.
Not sure if any of that woffle is of use to you!
Well my W poem W after being in Neville hall icu then Newport icu then royal free icu and back to Newport icu my care was amazing I couldn’t believe how caring they were when I received my diary best care possible but when I was transferred to ward e4 they didn’t understand had itu delirium which my brother found out by reasons the papers in icu the nurses didn’t have a clue!! And thought I was awkward and a nasty mad person .but that wasn’t me I was having serious hallucinations, in the end when I became more compus mentus I discharges myself for my own well being there needs to be more understanding of icu delerium on general wards it made me 10 times worse