This site is full of people's stories of bad experiences, and some not so bad. It really does seem to be a postcode lottery whether patients, and their families, get the all help and support they need during and after an icu experience.
My experiences have left me full of anger and frustration about how badly ìI have been treated. It really bothers me that other people may be, probably are, almost certainly are, suffering in the same way when it could be avoided.
I do not want to supress that anger, I want to channel it consructively, I want to DO something to help to CHANGE THINGS, to STOP IT EVER HAPPENING AGAIN. I don't just want to tell my sad story, and be told I'm not alone, I have ideas about how things could be better. I have always been that sort of person, I always want to tackle problems, to work out SOLUTIONS, yet all too often I feel surrounded by people who just shrug in resignation.
Is anyone who works in icu reading the posts here and using what they read to make improvements? Do different ICUs talk to each other and share best practice?
I have gone through PALS to try to get feedback to the hospital where I was. I eventually got an apology and thanks for the feedback but it seemed at best halfhearted and at worst as if my comments were unwelcome. I am not at all confident that anything will happen there as a result, and even if it did, what is happening in every other hospital in th country?
Am I alone in wanting to make changes? If not, what can I do? Who can I talk/email to?
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Kit10
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Hi Kit10 , I am a sister in critical care rehabilitation but before this a sister for over 20 years in ICU . All pals complaints are taken seriously, if individuals are involved they are investigated and dealt with appropriately, if a team issue - learning bursts, culture change projects , and education needs are commenced .
If your not happy with the outcome of your complaint you could ask for a face to face meeting with the matron or Doctor. Ask if they have a support group you could get involved in ?
On a personal recovery maybe assess Councelling to help recover from your traumatic time in ICU . ICU steps is an excellent resource for recovery.
All ICUs in the Uk work from guidelines, work closely with other networks and have visits from CQC .
From my own personal experience in 30 years of nursing I have never experienced such a tough 2 years , I couldn’t give the standard of care or support I wanted for my patients, their families or the staff. Covid - lack of resources- lack of staff- and skills made it impossible at times .
I’m not sure of what your complaints are but I hope you get some answers and closure , good luck x
Hi. I had an initial 4 week stay in ICU with Sepsis followed by a 10 week stay with covid. I was always given sympathetic care particularly from the nurses, even though I could be a bit grumpy at times. The ICU team saved my life on both occassions. It was a very difficult time and I was out of it for significant periods. I do think reading others experiences I was lucky to be in the hospital I was in, but am sure generally this reflects the care given.
I expect that as a lot of patients are in a delerius state they do not appreciate all that is being done.
My first nurse had to spend alot of time convincing me I was in a 'very good' hospital and not as I thought in a fair ground.
I had a real thirst which was only quenched by sponges on a stick. I was woken sometimes just after I had got off to sleep, for a blood pressure test or a tablet or 12 or something else. I was quite often cold and I was terrorised by the ICU physios, who didnt understand the last thing I wanted to do was try and stand up or sit in the chair, which I proved by falling on the floor. God bless my first nurse who came to the rescue.
After my first 4 weeks I recovered enough to go to a general ward, and then started to mobilise only to contract covid.
I was back in ICU and was on a ventilator and sedated, and then a tracheotomy. It was early days in the treatment but I was given a steroid drug trial, I was proned on a number of occassions, and somehow pulled through.
The effort put into my care can be seen from the notes I obtained last year.
I'm glad you are finally home recovering. I wonder if you would share what you mean when you refer the notes you obtained.
I have interstitial pneumonitis and have survived 5 induced comas. I am told this is extraordinary. Most dont survive 1. I am finally going through the pretransplant process. My last big appointment is May 5th for an angiogram and should know by June if I will be put on the transplant list.
I'm sorry, I got way off track.
During and after my comas I had severe delirium. I have asked for the records/notes but all they give me is a one page synopsis. I want to know what happened on a daily basis
Are you in England? I contacted the PALS for my hospital and they refered me to my local area NHS health records dept . I received all the clinical notes written for each shift from the time I arrived in A&E to when I finally left hospital 6 months later. It also included the daily notes of the physios that saw me. From these I could tell where I was, which nurse was looking after me, when I went on a ventilator and so on. I also received my scans on a disc and the radiology reports. For me it filled two lever arch files and has enabled me to follow what happened to me in some detail.
I have no overall complaints about my treatment in ICU, as they saved my life, and helped piece me back together again afterwards.However after being home for two months, I drew up a list about smaller, particular, things that I thought could maybe be improved, from medical staff not showing name badges clearly, to a lack of writing materials to help me to communicate after my coma.
I sent it to everyone I could remember from ICU who had treated me.
It actually led to me then being asked to help draw up a programme to help ICU patients sleep better.
That was very rewarding, and not only did it make me feel they were listening to me, it should also hopefully help future ICU patients.
So, maybe draw up a list of specific issues, and send it to ICU, or ask PALS to forward it.
I have many issues about what happened in icu. It's difficult to put them in order, but the number 1 issue was that I couldn't speak because of having a trachy and they did a very poor job of helping me communicate. If I had been able to communicate my needs and how I was feeling, and to ask questions, then some of the other problems might have been tackled,.
Yes, I was in a state of delirium for about 10 days, but it is very clear to me when that ended, and if I had been able to communicate the staff would have known too.
So my complaint through PALS, and the suggestion I made, mostly focused on communication.
I have listed the suggestions in other posts here.
During my time in ICU I was terrified, bewildered, frustrated, angry, and bored. I felt intruded upon and violated. I could barely move and couldn't speak most of the time until the trachy was removed. I was often alone (in a side room) and unable to call for help because my hands were too weak to squeeze the buzzer.
I was given no explanation of what had been done to me, and almost no comfort or reassurance. All that i did get came from one nurse in my last couple of days there. I did not get physiotherapy until I left icu, and it wasnt till hospital 4 that I got any serious physio or speech help.. The only speech and language therapist I saw in icu didn't help me communicate, only assessed my swallowing. and put me on disgusting food and drink, as detailed in other posts. Exercises to improve swallowing? Of course not. Sponges on sticks to clean out mouth? No. Hair washed? No. Nails trimmed? Not a chance. Yes I know why but when I see the rspca asd on tv when the rspca man is worried about the state of a dogs claws I wonder why people get less care than dogs.
In my icu dreams I was aware of being repeatedly told that I was in intensive care, but I was never aware of any sort of kindness or reassurance,. If there was any while I was unaware, it wasnt repeated after I properly woke up.
And yes, sleep was a problem. A simple thing that would have helped is if nurses and carers had been more careful to do things like using pedal bins and closing drawers QUIETLY in the middle of the night!
And noone in icu explained to me that I had been given drugs that often cause hallucinations and strange dreams, noone helped me sort out my dreams from reality, they were not doing diaries, there was no sort of follow up or outreach, and more than a year later I am still waiting for trauma therapy.
The 4th hospital helped me get a summary of my notes from hospital 1, and got an icu person from hospital 5 to come and explain trachies to me, which I posted about here a year ago. I think it was her who told me about icusteps.
Yes they saved my life, but i have had very little quality of life since. Maybe one day i will be grateful, but that day is still in the future.
Yep. My nails were not cut until I almost left ICU the second time. One of my nurses bought me some nail clippers out of her own pocket.My voice also went at some point, and they bought me a Tablet to try and type messages, but because my nails were so long I could not do it.
The call buzzer was often out of reach, as was the bed controller.
These things could be looked at, as frustrating at the time, but on balance they dont change my view I was treated with great care.
Physios did see me when I was sedated and I spoke to one recently that had seen me when I was in this state.
Hope you get the answers you are looking for soon .
I volunteer with the Intensive Care Society Patients and Relatives Group to help improve care for patients in ICU. We are working with the All Party Parliamentary Group on Intensive Care. I will find a link and include it. Also I include a link to our family story to provide hope to others.
I try to give back. I am a patient rep on a number of our 2 counties CCG groups.. I also work with a number of projects going on throughout the UK. So thats where my energy goes!
I have no complaint about how I was treated in ICU. The drop down to the wards could have been better as could rehab.
With a group of other icu patients and relatives we set up cc-sn.org, our aim was to help resolve some the issues we all experienced after discharge from hospital.
I’ve also been involved in various research projects and we regularly talk to health care assistants during their induction at our local hospital. There are plenty of opportunities & many patient voice positions - hopefully this will bring some change in attitude - in the smallest way - our speaking out means that the world is no longer ignorant of our plight.
I know I cannot add much more than that has been said, the truth of the matter is quite simple, if you have a NHS that is stretched to the limit you are going to have problems. I am sure PALS has had a large number of complaints that i am sure "Covid" will always be top of the list. I had surgery 5 months before covid conditions came in, having heard a nurse remind every patient that there will be after care a few months after leaving hospital, ( I had a heart bypass, Aorta aneurysm in a coma etc) and an information letter to back that up, I heard nothing. However this was February one month before the covid outbreak, yet covid was the excuse I didnt hear anything. My worry is that especially Binley woods and Rugby, there are huge housing estates going up, surely this is going to increase even more pressure on Coventry, not great if you are on a waiting list.
All NHS hospitals have a clinical governance team and a patient experience manager. See wgu.edu/career-guide/health... to see what a patient Experience manager does. While an apology is nice what you really need to know is that your feedback has led to change and that is part of the patient experience managers role.
Hi Copse77 thank you, that sounds exactly the organisation I'd like to communicate with. The link unfortunately didn't work for me but google found ics.ac.uk for me.
Some of what they say about what the staff will do adds to my list of what they didn't do for me. The issue of not being able to speak is not mentioned at all. How can you ask for explanations of machines and their alarm noises, or discuss yoùr ICU dreams with a nurse if you cannot communicate at all?
If anyone in ics is interested,, I would be happy to pass on my experiences and / or suggestions, particularly about communicating with people who cant speak. Can you suggest how I might do that?
Rhyl1
I agree, it would be reassuring to know that any of what I said to the hospital via PALS and what I have posted here has made a difference.
Hello Kit10I'm sorry that you've had such a difficult time.
I work as an ICU nurse and one of the things that we find really difficult is communicating with patients who cannot verbalise their needs, wants and express themselves. We try giving pen and paper but a lot of patients either have hands that are too swollen or very weak. We try lip reading but a lot of patients can't do it slow enough for nurses who can't understand them and they both get quite frustrated. We've also tried computers, Ipad things or phones for texting but not always successful.
Suggestions would be great but at the end of the day a picture board or letter board with time spent with the patient is all we can do.
Hi. I remember the frustration on both sides, trying to lip read, and type.
I also went a bit deaf and could not hear the names of the nurses, but I see on tv you are wearing name badges now.
But generally the ICU team did a great job and I am here to tell the tale after 4 weeks with Sepsis, and then 10 weeks with Covid........the look on the ICU team's faces when I went back the second time.......
Just an idea. Why dont the hospitals make up some preprinted word cards, that the patient could arrange into short sentences. You could decide on common requests that might be made by the patient.
Yes. I've seen laminated sheets with pictures that give you a choice of food, drink,toilet, painkillers, tv on and a couple of others.That's great when that covers what you want or need ,
It ought to be possible to compile a list of Frequently Asked Questions, like Where am I? What happened? What is wrong with me? What are all these tubes? What is that noise? Where is my phone, my glasses, my hearing aids, my dog, cat, partner, parent, child, car, clothes??? What's the date, time, day of the week? Who are you? Who are all these people? Am ì going to die? Why?
But...
You need to be able to say things that are not expected.
However understanding the person who draws up the list of common requests there will always be something unusual they hadn't thought of. And if the patient is confused by recent dreams or hallucinations, noone could guess what weird things they might ask about.
I've also seen pictures of the body to point to where it hurts, and pictures of food and drink so non verbal patients can choose their breakfast.
There is an app that you can get for tablets that has speech generation, a lot of preset phrases and then adds new words and phrases depending what the user types in, which might have been very useful. An OT showed it to me long after I could speak. Sorry I dont know what it's called. I have no idea how much it costs. She quickly decided I didn't need it and moved on to other topics so I never got to try it out,
Of course anything that relies on technology requires the device to be available and charged up. Paper based solutions are cheaper and dont need batteries.
Note that none of them are expensive or high tech.
- time to spend would be very helpful.
- when you've worked out how a person best communicates, record it on a laminated sheet that you stick on the wall over their bed along with the one saying what they cant eat. Train all staff to look at it.
- work out a way for patients to signal that they have something to say.
- ball point pens are difficult to write with, try a felt tip, maybe a whiteboard tablet. Use a chunky pen and or wrap it in something soft and non-slip.
- when a person has a speaking valve on a trachy, and it's not safe to leave it on 24/7, make sure it is put on before they meet visitors, doctors or anyone they need to talk to. Before you take it away, warn them and let them say all they need to say before they lose their voice.
- touch screens are actually very difficult with shakey fingers. An old fashioned keyboard may be easier. Or a printed alphabet to point to, or something like a oijah board,
- have pen and paper to write down the letters as they spell them out. This helps both you and the patient keep track of the conversation.
I sometimes got staff who wrote out the alphabet and pointed to each letter in turn. It was slow, and complicated by the fact that I was seeing double, so I kept missing letters. The staff often gave up in the middle of a word or sentence, or didn't understand misspelling or abbreviations, so...
- check that the patient can see properly.
- check they can hear too. They might use sign language.
-be patient, and if you dont understand give them a chance to clarify. If you still dont understand, find someone who might. If you cant lip read, find someone who does it better. If it's your first day on this ward, fetch someone else. However frustrated you get, it is at least ten times as frustrating for them. Do not give up and walk away, it's not fair, the patient cant walk away.
I eventually got a laminated sheet with the alphabet printed on which would have been much better if I'd been able to get any staff to use it. I might have been able to point to letters.
-if you get the patient to spell out messages they will need a space bar or end of word, a full stop or end of sentence, and a back space delete to correct errors.
- other punctuation and numbers would be helpful.
- if the patient is tech savvy they may find a qwerty keyboard easier than abcdef, or even a texting style 1abc2def etc or maybe magnetic letters like youd stick on a fridge door?
- if they use text speak you dont understand, go find a student nurse to interperet!
- some sort of predictive text is very useful. And a spellchecker.
The laminated sheets with feelings to point to were so superficial they were insulting. Be aware that the patients feelings may be very powerful. I was not worried, I was terrified. I was not cross, I was furious. I was frustrated times 20. I was bored out of my mind.
- make sure the pictures you give them to point to allow for strong feelings. That person has recently nearly died. They cant speak or move, they are full of tubes. Dont expect them to be nicey nicey. Cut them some slack if they spell out rude words!
I had delirium for the whole of my time in ICU but all based around being in a busy hospital setting so unsure what was real and what was not, my only real memory is being told I was being moved to a ward after ventilation with Covid 16 months ago now.
I work in the NHS and strongly believe I caught Covid at work although this is in psychiatry we had many Covid patients and as mswde1972 stated (Hello) we were totally overwhelmed within the NHS overall and the things we would normally do such as shaving etc may have not been a priority at that time though we try our best,
My experience of the 3 wards I was moved around to after ICU again were overwhelmed but the staff amazing and tried there best, I hope in the future to be able to do some volunteer or charity work for the hospitals I was in (Nottingham University Hospitals) we are incredibly lucky to have a free health care system as have worked overseas and an ICU stay would cost a huge amount,
I am potentially going to be medically retired or removed from my job as alas still have many post Covid issues and have worked in health care all my life in varied roles and really since early 2000 it has had to deal with the unexpected and we have lost staff to this virus.
.One thing I did notice when I was moved to a ward was I was clean shaven.
Hi. I'm not from the U.K., so I'm not in your postal code range. But what you have written made me remember something I've thought about. My Norwegian postal code both is the reason I got so ill that I ended up in the ICU and the reason I got the care and rehabilitation you should have been given.
First I had symptoms of a resparatory illness for several months, april to october. In that period I moved an didn't get a regular doctor (as we call it here) or GP until september. I got severe breathing difficulties and had to contact the local emergency ward 11 times, twice after being brought by an ambulance in the middle of night. None of the times did I recieve any help. I was told I had psychological issues/ anxiety because I hyperventilated and mild cold symptoms
In the end my breathing got so bad that my new regular doctor had me admitted to ICU and I got a CT and X-ray of my lungs, which showed I had pneumonia. I was moved to the county hospital and after 13 day I was put in a coma. My luck was that it's close to the capitol, and this is probably why I got transfered to the national hospital in Oslo while comatosed and put on Ecmo. That saved my life. I'm thinking that if I was admitted in another far off county or even a less priviliged country with no/poor NHS, I would be dead now.
I woke up two months later stable in the county hospital again. There I got intensive care basic needs covered, physiotherapy, and gradually help to eat by myself and communication. Allthough I had a clear impression that the hospital staff was busy with a lot of Covid patients I usually got the help I needed, except from sometimes having to wait uncomfortably long for help with sanitary needs. After 1 month and 3 weeks I was walking short distances with the aid of a walker and got moved to our best rehabilitation hospital. Last week I moved to a local rehab centre in my muncipality, after almost 2 months in that hospital. I've gotten so much help, and still getting it, from physiotherapists and ergotherapist (for hand training) that I my way back has gone a lot quicker than expected.
In spite of being thankful and feeling priviliged, I know that I ended up in this situation because of profesional neglect from a strained heath care system during Covid. The effect of the pandemic on heatch care around the world is explainable, but not excusable. I've gotten help from a social worker at the rehab hospital with a patient complaint (what you call PALS?) and applied for compensation. As a result of my illness I lost my job, wasn't able to spend time with my wife after 19 months apart due to the pandemics travel restrictions and am not permitted to drive a car until I get an approval from a doctor.
As you I believe in actively fighting for a better system and for structural change to improve national heath care. That's why I recently became a member of the "Patient Damage Association" here. They have the ability to help with a lawyer that can handle my case. I have always believed in adressing issues of public interest to politicians and political parties. I'd never vote for a party seeks to reduce national health care with business like economic models. Really hope the feedback you have gotten above from U.K. citizens can help you with this, and that you can use your negative experiences for something constructive. Health care and good intensive care should be an equal right, no matter where you live and what your income is.
I said I would get back to you with the name and contact details for the Intensive Care Society. Dr Sandy Mather Chief Executive Officer would be interested to speak to you about your experience and to see if you would like to join the patients relatives and public advisory group. Her Contact details are 02072804350. Email sandy@ics.ac.uk
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