What kind of information were you given prior to transferring from ICU to the general ward?

I am a nurse working in an intensive care unit in the UK, and I'm interested to know what information ICU patients and their relatives were given in preparation for transfer to the general ward. I'm keen to improve the ICU discharge experience for patients and families. Were you just given verbal information, did you receive a general ICU booklet, or did you receive a personalised discharge summary (providing information on your critical illness and your experience in ICU? How did it help or hinder your move to the ward? I'd welcome responses from ICU patients or any relatives of someone who spent time in ICU.

30 Replies

  • Kinnyl: I'm interested in your request, because you assume that ICU patients and relatives are given information/prepared for, transfer from ICU to the general ward.

    Well, here's my experience:

    After being in ICU for two weeks, I was moved, with no notice, and in a great rush, at 2am, on to a general ward, being told that 'we need this bed'.

    I didn't cope well on the general ward and was re-admitted to ICU 48 hours later.

    When it came to transfer again, a week later, I was informed by a nurse manager that 'we have found a nice bed for you on the general ward and you will be moved there this afternoon'. I expressed some concern (eg was I well enough) and was told 'you will be OK'.

    In both instances, my family were not advised of the move - they arrived at ICU and had to ask where I was.

    This was in an acute general hospital in the greater London area, in 2011.

    I'd be interested in your comments on this experience

  • Hi Muncii, thanks for sharing your experience. I'm saddened to hear your story. Unfortunately, the pressure for ICU beds is extremely high, and emergency patients may need to come in at any time of the day. In the ICU where I work, we always have 1 empty bed, so that we can admit an emergency patient. However, when there are 2 or more patients needing an ICU bed, the patients who are getting better, and are assessed as well enough, are then reviewed to decide who may be moved to the ward, so that the emergencies can come in. Sadly, this can happen at night, despite forward planning.

    Usually, we have 2 consultant rounds per day, one in the morning and one in the evening. The patients who are getting better, don't have breathing tubes, and who need less intensive nursing care, are moved to our high dependency area of the ICU, where 1 nurse will look after 2 patients. This change of area, where there is also less monitoring technology, and less equipment, enables the patient to get used to not having constant nursing attention, and we reduce the number of times we monitor their blood pressure, etc., and aim to increase the patient's independence and mobility. The reasons for this are to gradually prepare the patient for moving to a ward.

    On the consultant rounds, the patients that are well enough to move to a ward will be identified, and with the patient's nurse present, the patient will be told about the possibility of transfer, and it will be explained that their condition has improved to the point where they no longer need intensive care. The nurse will then explain that the nurse in charge will look for a bed on the ward relating to the patient's condition, but that this may take some time. The nurse would then also explain this to the patients family when visiting. We do have copies of the ICUSteps booklet available, but I am not sure that patients and their families are always given a copy. The booklet gives clear information about what to expect during the ICU journey, and in an ideal world, there would be plenty of time for the staff to prepare the patient for discharge to a ward. The booklet is beneficial as it can be used to form the basis for this discussion, and can be referred back to at any time.

    A few months ago we had to admit 7 emergency patients in the space of 24 hours. This meant that 3 patients had to be moved to the ward quickly, and 3 bed spaces that are not usually used for patients had to be used to accommodate this many admissions. In these cases, there was little time for sitting down with the patient and spending vital time explaining everything. I'm certainly not saying this is the right thing for the patients who were moved, but under those circumstances, it was a case of "if this patient doesn't get moved to the ward quickly, that patient may die". Depending on the time of day, we would always inform the patient's relatives. If it were in the middle of the night, we may not call them until the morning. It is vital that relatives get plenty of sleep when a loved one is very sick. We encourage them to take of their own needs, so that their health doesn't suffer too. It would be hoped that the relative would have already been informed that the patient was well enough to go to the ward, but sometimes this conversation has not yet taken place.

    Ideally, planning for discharge from ICU should start early, and involve the patient and family. The ward environment should be discussed, and the differences between the 2 areas could be explained. Discussion could then take place to inform them how the level of nursing care will be different. It would be explained that a full handover would be given by the ICU doctor to the ward medical team who will be looking after the patient, and that nursing staff would provide the information required about the patient's illness, their ICU stay, any problems that may be ongoing (such as being confused, or unable to sleep), as well as nursing care required. The ward nurse should be told of any assistance required (eg - help to eat, or wash, etc.). These hand-overs take place prior to moving to the ward, so that the ward nurses can arrange any equipment required, and plan their nursing care accordingly).

    There are occasions where, all of this has been done, the patient and family have been involved, but the patient just doesn't remember the discussion or the information. This can be due to many reasons. The patient may have been on strong drugs during the critical part of their illness, and the effects of these drugs may last a while. The whole ICU experience can be scary, confusing, painful, etc., and this may result in patients having a different sense of reality for sometime after their ICU stay. Over time, these feelings should wear off, but it can mean that they may not remember things that have happened.

    Sorry this is quite a long reply. I hope it helps to shed some light on what staff are doing to prepare patients for transfer to the ward. Unfortunately, this process is far from perfect, and it is hoped, that by hearing the experiences of patients and their families, that work can be done to improve this vital area of care, and reduce the fear and anxiety caused by leaving the ICU. In an ideal world, there would be no shortage of ICU or ward beds, the staff would have time to sit down and discuss plans of care with patients and their families more frequently than they currently are able, and the move to the ward would be a positive experience.

    I hope you are on your way to a full recovery. Please feel free to comment or ask if you need me to share any other insights with you.

  • i was in icu last year for 4 weeks, moved on to hdu for 2 nights and then on to a general ward nothing was communicated to me about moving, and i didnt receive any information till 3 or 4 days of being on a general ward.

  • Hi Jojokarak.

    Thanks for sharing your experience. Unfortunately from what I'm reading, there is a distinct lack of preparation and information giving for patients prior to discharge from ICU. It is my hope, that our ICU will be able to improve this process, following on from the work I am currently doing. It would be helpful to understand what information you would have found helpful before you were taken to the ward.

    I hope you are now on your way to a full recovery from your illness.

  • The first time my husband was ready to leave HDU for a general ward after major surgery, the matron visited us in HDU, introduced herself and told us how my husband would be cared for over the ensuing two weeks and how her ward was managed. It was very helpful. However, my husband had a dreadful setback and landed up in ICU and HDU for a second time before being moved back to a general ward and this time it was all done in such a rush as his bed was needed urgently and there was no time to meet the nursing staff as we had done before. However, I understand that ICU is now working on a project where there is a hand-over period of a few days. The ICU staff visit the patient on the general ward and liaise with the nursing staf to ensure that any complications or anxieties, which are often inherent in ICU and HUD patients, are dealt with and treated appropriately and quickly. This procedure can only enhance a smoother transition process for both patient and the general nursing staff. Of course, there will always be times when there are staff shortages and this cannot happen but in theory it is a good idea.

  • Hi Valruss.

    I'm sorry your husband suffered a deterioration in his condition. I hope he is now on the mend.

    I agree that ICU and ward staff need to work more closely together to make the process of transfer to the ward a smooth process and a more positive experience for patients and their families. I believe that with adequate information provision and preparation, including frank discussion with the patient and family about what care is required, this process may not be quite as distressing. I'm interested to hear that the staff at your hospital are trying to improve this process, and would be interested to hear the outcome of this.

    Best wishes to you and your husband.

  • Thanks KinnyL

    My husband did return home after three months in hospital but unfortunately his condition deteriorated and he died a year later in September 2014. However, I have kept in touch with the ICU staff, via the ICU Steps meetings and they have been a great source of support and comfort to me, a couple of them becoming good friends. When I attend the next meeting I will ask the ICU Nurse Tutor if the project is continuing and being of benefit to patients and their families and also to the clinical staff on the general wards. I'll be in touch as soon as I know.


  • I'm so sorry to hear about the loss of your husband, but I'm glad you have support, and have developed new relationships from this.

    I'd be very interested to hear any news of this project, thanks.

    Take care.

  • Similarly to Muncii, I was moved to HDU on the 4th day of being in ICU where I stayed for 2 days, (awaiting a bed). I was then moved to an adjacent ward where I stayed for about 4 hours. The ward was a surgical ward & was a medical case and so I was moved to a medical ward. That night I was rushed back to ICU in an emergency.

    I was sedated for 2 more days & then moved to HDU, (while asleep), for a further 2 days. Then due to a shortage of ICU beds I was moved to a heart ward for a day, got told I was in the wrong ward, (again!!), and then moved to another ward for my last 5 weeks in Hospital.

    Apart from my first move from HDU, my husband was not told of my movements and he only found out when he made his usual 11.00 check-up call to the Ward. When he visited in the afternoon he had to go & chase up my belongings.

    Whilst in the general ward I had no visits by anyone from ICU who could explain why I was there.

    I had no discharge info except the usual letter when I was finally discharged from hospital. This all took place 3 years ago.

  • Hi Lacemaker.

    You sound like you've had a terrible time. I'm sorry to hear your distressing story. I can only imagine how bewildering and frightening this whole time was for you and your husband. It goes to show, that there is still a huge amount of work to be done, to get this process right for patients. Hopefully, things will improve, but unless these problems are brought to the attention of those with the power to change the system, things may never get better. You probably have a PALS (Patient Advice and Liaison Service) at your hospital. They are there to support you, and will help you to provide feedback of your experience to the relevant departments, if you felt it was something you wanted to do.

    Good luck with your recovery, and I hope you and your husband are now looking forward to the next phase of your life together.

  • Had no information, and was actually moved to a different hospital while still in a coma, my family were not informed of my move either. I awoke in a side room off A&E and had a nurse with me most of the time, Had a bag attached to my side, and a vac bag, shocked to see a 23cm wound, had a tracheotomy, so couldn't speak, in pain and not able to say.

    Once the trachea was removed, was told I would be OK, been in a coma for 3weeks

    as my bowel had burst, and they hadn't expected me to live, and how lucky I was.

    Was then just moved into a ward, I was still a bit out of it, and couldn't walk through muscle wastage, or was aware of much at all.

    Was later put into a side ward, as they discovered I had acquired shingles at some stage.

    My Catheter was removed, and was told that a door led to the toilet, I was then left, not even a bell given to me, not as if I could have pressed it.

    I found out how weak I really was, when I struggled to get to the loo,

    thinking that I must be able to, as why would they remove the catheter.

    Just watched the floor come up and hit me.

    It seems nobody told them I was recently out of a coma, and was unable to do anything as yet.

    Now suffering PTSD

  • Hi jackied4089.

    Thanks for sharing your story. I am sorry you had such a bad experience. Unfortunately, PTSD is common amongst patients who have had life-threatening illness leading to ICU admission. I hope you are getting help and support for this. The ICUSteps website icusteps.org is full of useful information.

    It is clear that more needs to be done to raise awareness on the general wards, about the nature of critical illness, and its residual effects on patients.

    Do you mind if I ask what information you and your family would have found useful at the various stages of your ICU / ward stay?

    Best wishes to you.

  • My son who is my next of kin, would liked to have at least been spoken to by one of the doctors, the only information given was that I most probably would not survive.

    I, on waking, would like to know how long I had been in a coma, what was the bag, and why my stomach was a huge open wound.

    As it was an emergency ileostomy, and my bowel burst in theatre, what this meant for the rest of my life.

    What was the bruise marks on my neck,

    Even today, have a bad time in knowing what's happening, no one to talk to.

    The tracheotomy has left me sometimes unable to swallow, without coughing first, if turning I get terrible pain in my ribs, and still get very out of breath.

    Just explanations on how different medical procedures could, or would affect you in the future. Like the horror of the nightmares I had.

  • Neither myself or my family had any information, verbal or written. I was moved from the ICU to the HDU then to a ward that had to be created as it was such a busy time (over Christmas and New Year period). It was down in the recovery ward where the theatres are. There were no proper facilites there, not even catering. I was there a few days then moved to the respiratory ward, still feeling drugged up and disorientated, still couldn't walk properly. The staff didn't seem to understand how incapacitated I was so I was left to struggle along on my own. Even when I asked for help, (apart from one lovely nurse who was on at night), I was faced with very angry HCAs who seemed to think I was putting it all on!

    The only written information I had was when I left hospital and was given a sheet telling me what had been wrong with me and what medication I had been on.

    I very much appreciate what you are doing as even though I was getting better, I felt so distressed at the way I was being treated. It would be nice to think that this situation would be improved for people in the future. Thank you.

  • Hi Vianne, thanks for your reply.

    The more responses I am getting to my question, the more determined I am to do something about this. I am so sad to hear the distressing experiences that many of you have had.

    Things definitely need to improve. Would your experience have been more positive if you had received consistent and ongoing information relating to your illness, the care you were receiving and the transfer process?

    I would value any insights you have as to how this area of care could be improved for patients and their families.

    Thank you, best wishes.

  • Kinnyl - I think you can tell the common theme here: patients have all been moved around repeatedly between ICU and other wards, suddenly and often apparently randomly - due to bed shortage. It seems a case of 'putting the patient anywhere where there is a free bed'. Especially at holiday periods such as Christmas, and also at weekends. So the notion of a seamless continuity of planned care is a bit of a farce. I'm sure we all understand the pressure on resources, and appreciate that ICU and HDU beds are at a premium, but that doesn't compensate for the trauma of suddenly being told you are to be moved out of ICH/HDU (?where/anywhere- even to a different hospital!) and your relatives having to hunt you down because the ward you were in have no idea where you have gone to.

    Sorry if this is a bit of a rant, and I'm sure the idea of a discharge summary from ICU/HDU is a good idea.

  • Hi Muncii, I totally agree that this is not the way things should go. And you are right, these experiences are definitely traumatic for patients and their families. If it happened to me personally, I'd be angry.

    It's trying to prevent occurrences like these, that drives change. Although I would love to be able to wave a magic wand, and everything be perfect, unfortunately, I am but one person. It is impossible to change everything at once, but by taking it one step at a time, hopefully things can be changed for the better. I am certainly gathering ammunition to take forward to my unit, to prove that things can be done better.

    Thank you for your invaluable input.

  • Hi KinnyL, thanks for your reply. For my family I think that the most helpful thing would have been if they had been explained to about the fact that the drugs would cause all sorts of hallucinations, paranoa, voices, etc. They found it all very upsetting and at one point apparently were wondering if I would end up getting put in a mental hospital! No one ever said to me that the horrific nightmares I was having was due to drugs, I don't know if it would have helped me much as they were so real but it certainly would have helped my family. I can appreciate that the units are extremely busy and there isn't always time to spend with families but maybe an idea would be to have volunteers to answer any questions. Or maybe have some printed sheets to give to patients and relative explaining the transition. We were lucky to have a very good team of doctors but obviously they are not always there and after I was moved back to the respiratory ward the people who gave me the most information was the Physiotherapists.

    As far as being moved around, I was moved 11 times in 6 weeks and although most of it was probably unavoidable, it would have been good to have had a summary as others have mentioned.

    I think one of the most important things as well as giving the patients consistent information is educating the general nursing staff for when you go back to the wards. Most of them seemed to have no idea of what its like to have been in the ICU and if I tried to explain how I was they would look at me as if I was just making it all up. There is so much involved in health care and unfortunately the resources aren't always available but I think we all would agree that whilst it may never be perfect, any help for positive changes is very much appreciated.

  • Vianne - I think that's an excellent post! your comments about the hallucinations, paranoia etc, remind me of my own similar experiences in ICU. I have been following this website for a couple of years now, and the number of times former ICU patients have brought this up, is no coincidence. It's obviously very common - but something which, in my case, the ICU staff seemed unaware of. At least, if they were, no-one mentioned to me or my family that my mental state was not 'normal'. My daughter thought I was depressed (I've suffered clinical depression some years ago) and so the ward brought in a psychiatrist - but that really wasn't the problem, I wasn't depressed - but I was having some very serious and frightening delusions and hallucinations. They were so vivid and real, I can still remember them with great clarity.

    I do think it's important for ICU staff to realise that patients are not just undergoing great physical trauma, but mental trauma too. For instance, from my own experience and what I've read on this website, many patients' paranoia involved them thinking that the clinical staff, or other patients, want to kill you. This is obviously very distorted thinking, but to the patient, it seems real. If ICU staff can understand this, they can be more re-assuring, and 'reality focussed' in their interaction with patients (and relatives)

  • muncii, you are right, it seems to me from reading the posts here that the staff trying to kill you is quite a common hallucination. There was one nurse in particular who seemed to be torturing me, I hated her, and because she was on nights my family never met her so I had no way of being reassured by them that she was ok. Like you I can still recall those nightmares in minute detail, every last one of them! I can't even put them into words properly because it doesn't sound particulary frightening but for me at the time it really was! Hope your recovery has been successful, its like being a member of a club that no-one wants to join isn't it?! lol!

  • thank you Vianne, yes we are members of a very exclusive club! I'm recovered well enough now, and hope you are too. I've found the health unlocked website very helpful over the last couple of years.

  • Hi Kinnyl

    My experience is similar to others. I was admitted to hospital as an emergency with necrotic pancreatitis , initially sent to a general ward, after two days I was transferred to HDU, then to ICU where I remained in an induced coma for three weeks I have very little memory of these weeks, My wife told me later that she was kept informed all the time ( she was advised several times that I was unlikely to survive the night) After three weeks I was moved to HDU, but again I have no recollection of the initial move because I was still heavily drugged, I gradually improved and after five weeks I was moved to a general Ward, I had no advance warning of the move, the porters just came to HDU and moved me, bed and all, to the Ward, I never even had the chance to say goodbye and thanks to the wonderful staff in HDU ( I called back later after I was discharged ) Neither my wife nor I had any advanced warning of the move, she came to visit me on HDU and was told I was on the general ward.

    I had one visit from my nurse from HDU the day after I was transferred, but that was more a " social call " because my wife and I had become friends with her ( we still keep in contact after three years )

    I have to say that some, not all, of the staff on the General Ward seemed to have no understanding of how to deal with patients who have been in ICU/HDU In my case I had a catheter plus a drain from my abdomen, I was attached to two " trees", one holding a bag of saline into the drain in my abdomen and one feeding me intravenous drugs, having been totally immobile for nearly 8 weeks I could only just walk with the aid of a Zimmer frame. Those were the physical problems, I also had the usual emotional problems, fear, confusion etc. I was accused by one nurse of laziness when I asked for a commode, she said I could walk to the loo. I understand the principle of " tough love " but she had no idea of how to deal with a patient in my situation,I confess to getting very angry with her when she said to me the following day that she had spoken to the physio people and she said there was no reason I could not walk to the loo, I knew that to be a lie and did intend to take the matter further but I never saw her again ( when I told my wife about the incident, and identified the nurse, my wife told me that when I was initially admitted to the general ward, before going to ICU, this nurse had refused to lend my wife a pen so she could take the phone number of the ward, that at a time when she had just been told I was unlikely to survive--very bad. ) This nurse was the worst, most of the others were very kind, but few appeared to have any experience in this area. I was eventually discharged after nearly three months in hospital. It was only because I called back into HDU to say " hello and thank you " and told them of my fears, memory loss, emotional breakdown etc, that I was informed of a scheme whereby ex patients from ICU/HDU could meet with a Doctor who would explain in detail the sequence of events,treatments, drugs etc I did take advantage of this offer and had an appointment several months after I was discharged and it did help me. The outcome of this visit was that I was diagnosed with PTSD, I explained to the doctor the effects of my illness on my wife, he was able to diagnose she also was suffering from PTSD.

    It was only by accident really, that I had the interview with the doctor, I never received any documentation or verbal explanation about all that had happened or the sequence of events when I was discharged, it was the nurse who became our friend who told me about this site and advised me to use it. I have not posted for a long time, but I do read many of the posts and that does help, but I still have the residual problems many other "survivors" experience

    Apart from my own experiences, I do feel that not enough support is given to relatives of people in ICU/HDU, the patient is very often unaware of what is happening due to drugs/coma etc--yes they are told the nature of the illness affecting their loved one and the treatment being given, but there is no system in place to give them emotional support, my wife suffered terribly from stress etc and still cannot see an ambulance with its emergency equipment operating without becoming very emotional thro the memories it evokes..

    Sorry to rant on and on, I am eternally grateful for my "second chance " and will be forever indebted to the NHS and all the great people who fought so hard for me ( but I confess to feeling better for " venting my spleen " ) I know my story is not remarkable, but I hope you are able to make use of the information I have given.

    Good luck with your project and thanks for caring and going the extra mile


  • Raffles - thank you for your post. Your comments 'rang many bells' for me. I had one nurse on ICU who appeared to be clueless and when she was allocated to me, I was terrified. At the time I had a trachy and couldn't speak, so I had to write down a message to the ward sister, that I didn't feel safe with this young woman, and request a different nurse to monitor me. I was unsure and anxious about how the staff would react to my request - would I be labelled as difficult? but they did agree to give me a different nurse.

    I think that in spite of all the drugs and confusion, when I was in ICU, there was a fundamental awareness of being close to death, and very vulnerable and dependent on skilled (hopefully) people, and machines and medication, to do their job properly. It's a very extreme situation.

  • Hi KinnyL

    I was in ICU for 3 weeks and I could not fault my transfer back to the general ward, I was told on the morning that I was being transferred back. When I was all prepped to go the ICU nurse that had been looking after me came back to the ward with me for handover, and both him and the sister came down to see that I was ok on there way home from there shifts, a real credit to the nhs.

    I was given a package on the trauma of being in ICU and also the information about ICU steps, I would say the one big thing that helped was the dairy that my family wrote in everyday I was in there so I didn't loose all track of what had happened whilst in a coma, I don't know if this is common practice, but it was a real help to me.

    Hope this helps, and if you would like any other questions answering feel free to ask



  • Hi my sister spent nearly 6 months ( and nearly 11 months in hospital ) in ICU after her liver transplant she has chroans ,(30 years) her liver struggled at first with quit a few complications but is now working like a Royals Royce , she went up on the ward 5 times but ended going back into ICU as she has set backs , each time the nurses was brilliant helping her Settle from ICU to the ward , they even arranged a nurse to stay with her for 3 nights constant wen she went up onto a ward . me and my mum stayed with her during the day as she was so frightened to be left on her own , it was her 1st Anniversary at our last out patents and she was given a diary that ICU nurse/dr's/physio had kept for her stay in ICU , which she is finding very hard to read , as for many months she was on life support and thank god doesn't remember wot she had been through , we can't thank the ICU team enough x

  • Hi. I spent two weeks in critical care September 2011, I was told early morning that they were preparing for me to be transferred to HDU and thats it. I spent a further 10 days and then told I was being transferred to a cardiology ward, I was greeted by the night staff and was told they had a lovely spot for me near a window, I spent a month their then unfortunately I had Mrsa and was in a room on my own for 3 weeks. Myself or family never had any information or booklet, it was only when I was diagnosed with ptsd that's my counsellor gave me the information on icu steps. It was a very traumatic experience not knowing what was happening and I inky hope that things have changed.. Regards ceri

  • My family were given a booklet I was told by the staff that I was going to another ward but I was still quite out of it so can only remember a little.

  • My wife was transferred from ICU to the specialist Coronary Care Unit on Saturday night. We'd already discussed her move with the consultants and nurses on ICU and they were trying to find her a bed in the most suitable place. She was admitted following a cardiac arrest and subsequent hypoxic seizure and coma and spent nearly a month in a theta coma before finally regaining consciousness about a week ago and beginning to speak in the middle of the night on Thursday. Originally the plan was to move her to a stroke ward where she could receive neurological physio, but in the event they found her a bed in coronary, because it meant they could continue to monitor her heart for arrhythmias.

    The rush was only due to the fact that an emergency case had just arrived at A&E and they needed a critical care bed immediately, otherwise they probably would have taken their time. My wife was judged the least needy on the ward at the time so she had to move on to free up the bed, which is completely understandable.

    The team in the ICU have been fantastic, explaining everything at each step of the journey and called me Saturday night when the move had to happen, letting me speak to my wife personally to explain exactly what was going on, so I think it helped to reassure her that this was all quite normal and she seemed quite relaxed about it.

    An outreach nurse accompanied her down to the other ward and spent a good amount of time settling her in and going through the details of her situation, treatment plans and individual requirements. The nurses in the ward (other than the particular nurse looking after her) still generally seem quite unaware of how critical her condition was previously and are a bit taken aback at how much more I seem to know about the ins and outs of her prescriptions, what the likely effects of her medication may be and even what I'm watching on the ECG and how to react to alarms and changes.

    Having been fully immersed in the world of the ICU for a month I've become quite conversant in the language of the consultants and nursing team, so once again I'm finding that getting myself involved in my wife's treatment is having a positive effect, even if it's just filling in any blanks and answering any remaining questions the team on the new ward may have. This relates back to having been kept informed at every step of the way and consulted on major decisions being made, so I feel the importance of that part of the process shouldn't be underestimated in the longer term care post-transfer. It also helps my wife to have me explain things to her, because most of her experience with ICU has been whilst unconscious while I've been there taking things in and speaking on her behalf right from the beginning and will continue to do so until she's strong enough, and lucid enough to take over and speak fully for herself.

    So, maybe this should feature in your guidelines - make sure the relatives are part of the process right down the line (not just in the move, but in all aspects of the care process from first admission), because they can help in the longer term after outreach nurses have played their part, being a vital source of reference overseeing the care of their loved one and informing nurses who are perhaps not aware of what to expect of a patient arriving from ICU.

    Reading some of the horror stories on here I'm thankful that the hospital looking after my wife obviously has a lot of guidelines in place already. I was directed to ICUSteps by nurses there, so this community has obviously been listened to.

  • I was in ICU 2 years ago because of a severe pneumonia i was in there for 18 days and for 12 of them i was in an induced coma on the move up to the ward i was given no information from being totally looked after in ICU to the wards where i had to fend for myself.

    i had problems walking when i woke up and had a zimmer frame which i hardly used in intensive care it was only used to go from the chair to the bed etc.

    But when i moved to the ward there was a mix up with the steroid medication where i didn't get given it until i said to the nurse.

    I ended up having an anxiety attack because I felt like the support I was given was suddenly gone and i honestly felt like i was free falling and i wasn't told anything i wish i had the information and support for when i was up on the ward. they said i was going to get a diary from when i was under with pictures. but what happened to me is still affecting me now with flashbacks which should be explained because some are terrifying. and i was left on crutches for 6 months after because i had hurt my knee when i was collapsing and i i told the doctors at the time and they just waved it off because they were more bothered about my chest that my leg and went to the hospital 2 months later after my knee completely locked they sent me for a scan 3 weeks later only to be told they couldn't do anything because it was to late.

  • I was in ITU for 5 weeks 4 with a tracheotomy in. When I came round the Drs kept telling me I'd been ' very very ill ' and extremely lucky. I/ we were given no information or booklet on discharge to the ward. Once there no one seemed to know what to do with me or what had happened. I still couldn't walk and needed help to reach the toilet move up in bed etc. by day 4 I went home.

    I have a legacy of things going on which I just don't understand but on reading the ICUsteps booklet online I now understand some to be normal part of being in ITU.

    I still fell very frightened alone and not myself. It's as if I went into hospital one person and have come out another.

    Hope this helps you to prevent someone experience this by keeping them well informed at every stage.

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