ICUsteps
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Staff nurse

Hi there I'm a newly qualified staff nurse at a large ICU. I feel intrusive writing here as I'm obviously not a patient and have never suffered the way many of you have. But please do bear with me.

I would love to know from patients and relatives what you felt could have been done better by your bedside nurses? And what was done well? I hope this will help me to improve my own care.

Thanks in advance for your time!

Hana

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Hana, I could not criticise the staff at all, they were wonderful (according to my family). They all talked to me, washed my hair, looked after my diabetic husband, told my parents to stay away when they could see they were exhausted, stopped my friends visiting when I was coming around (I was beastly!).

The only thing I am missing is a photo of me in a coma which I believe would help me comprehend what happened.

My sister kept a diary for me which has helped immensely, so if someone is without family, can you do this for them?

My itu follow up nurse is phenomenal, I have visited the ward 3 times and seen “my bed” which I find fascinating but is distressing for my family.

My itu nurse set up our local icu steps group which is amazing x

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Hi Hana my name is Rebecca, I live in the USA and I really wish I could find an ICU steps group!

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It sounds very helpful!

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Hi Rebecca, Unfortunately ICUsteps is only a UK charity but with interest from around the world, hopefully one day we will be international, being a completely voluntary organizations we rely on the goodwill of ex-patients, relatives and healthcare professionals to run support groups, so if anyone would like to become our international partners we would love to offer our advice on setting up ex-ICU patients and relativesI support group.

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Hi it’s Rebecca again, recently needed to change my useriD from

ICUBMcoma to ICUcomabm2017 because I couldn’t remember it.

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Hi Hana, like bbdebs I could not criticise the staff at all. There were occasions when it seemed like there was no one about for ages, but that was probably my misconception of the passage of time. One time I was being 'rolled' during a bed change one of the male nurses leaned over my ear and gave me such an inspirational speech of hope, I wish I could have recorded it!

My family were also generally full of praise for the nurses and staff. My wife had an incident with a rather bossy male nurse over her mobile phone, when she insisted that all she was doing was just turning it off.

I visited the ICU a few months after my discharge; meeting the nurses who had been looking after me was an emotional experience.

I also would have been interested to see a picture of myself in coma, just to see what my family had to see.

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Same as others have said @BBDEBS @stevet11753

I couldn’t have had better care - I was treated royally.

We set up ICUsteps group with help of Outreach & Physios -

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Hello Hana

Firstly let me say how much I admire your initiative and commitment to what you are doing, by coming onto this site to learn more about how patients experience nursing care.

I spent ten days in a coma in ITU last year due to sepsis. I was very impressed by the care and compassion I received at every stage. Due to the trauma of the illness and the extraordinary nature of the hallucinations I endured I wrote a thirty minute talk on the impact of nursing care on my experience which I delivered to an audience of ITU professionals at a Critical Care Conference in Basingstoke last year. It’s too long for here, but if you would like to read it I would be happy to send it to you. My email address is gandalfsbadger@hotmail.com.

Kind regards

Mike

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I would absolutely love hear your talk Mike! My email is hmccurdy02@qub.ac.uk

Best wishes, Hana

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Thank you so much to everyone here for your replies. After all you've been through it's very thoughtful of you to reply to me. I'm so relieved to hear of your positive experiences of nursing care in ICU, it's honestly a real morale boost.

The unit I work in has just introduced patient diaries that include photos so it's good to know that some of you would have liked these as it means we're going the right direction.

Thank you again and good luck in your ongoing recovery,

Hana

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Hi Hana, I am a member of the ICUSteps group in Belfast and some of the nurses in the group also asked us our thoughts and memories of the nurses in ICU. Overall my experience was ok under the circumstances! I did have a few issues with night staff, as I felt they were not as attentive as day staff. Also I had real difficulties with being laid flat, due to trachy and other tubes I always felt I was choking but the nurses didn't seem to understand this? Also I welcomed nurses continually telling me the same stuff over and over as my brain was not taking it all in. This is something the other nurses in the group thought was reassuring, as they felt that patients might think the nurses were being too repetitive. I could talk all day about my experience lol, but that is the basics. Hope this helps

sonja

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Hi, i was in icu for two weeks please ensure the relatives write a day to day diary as when you come out its good to know the events that happen, as a patient your memory is non, also a writing board would be good as I couldn’t speak. You are doing an amazing job, I was so happy with the care I received.

Kind regards

Joanne

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mt story of ICU was both positive and negative. Life saving abilities .. top notch. Bedside respect to the patient and family needed the nurses to be more self aware. In such a heightened state of fear in regards to the situation they should have understood the need for a patient, in my case my son to be treated with the same respect as if he wasn't on life support and in a coma. Using his name, and saying something as simple as the respiratory staff did when they were suctioning his lungs. "This is what we're doing Chris, almost done". Not making assumptions and viewing situations through their filters. Kindness. I wonder if they ever had this, or it was just lost along the way. I could write specifics, but it's not required for the point to be made. Good luck, the fact you're asking the question speaks volumes.

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Hi Hana

I received the most incredible treatment from the ITU nurses (and doctors). There really are no words to express how wonderful they all were.

My family said that, while I was on the ventilator, they received a lot of support from the nurses. This meant the world to me, as I know that my mum, in particular, was devastated by what was happening to me.

What was done well; explaining what had happened to me, talking to me before procedures and ensuring I understood and consented, emotional support during distressing procedures, ensuring my personal care needs were met with dignity and just generally being human e.g. talking about normal stuff like the weather. To be honest, everything was done well but those are the big things that spring to mind. I felt incredibly vulnerable and anxious about my dignity; I just hated being washed and having my catheter changes etc but they showed so much respect towards me and it made it more bearable.

I’m sure you’ll make a wonderful nurse, you clearly care so much. Good luck. :)

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Hi Hana. I agree with all the comments here, which are applicable to my own time as an ICU patient. I'd like to add:

it's very common in NHS hospitals for patients to be moved wards, sometimes frequently, due, I think, to the pressure on bed space. I was moved out of ICU and on to acute wards, twice during my 4 week ICU stay. One of these moves happened at 3am. (very aggressive nurse, no apologies) My family were not notified of the moves, so when they arrived at ICU, they found me gone (my daughter thought I must have died) and the ICU staff did not know which ward I had gone to. They had to make lots of enquiries to find out. Can you imagine how distressing this was for my family?

I was so 'out of it' with medication etc that my memories of these moves is very vague. Family tell me that I was only on an acute ward for a few hours, and then moved back to ICU.

I'd like this kind of thing to stop happening, but I doubt it.

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Hana - I'm truly grateful to the overworked staff who looked after me for a month in ICU in Jan 17 and agree with the comments others have made. I would like staff caring for those of us on ventilators, who are finding communication hard, to remember we still have the facility to understand and not treat us as senile even if we are in our seventies and are temporarily unable to speak. I found life particularly frustrating when moved to a single room, as I was colonised with candida auris, as I wasn't given a call bell so found it hard to get attention (there wasn't always someone with me) this together with frightening hallucinations was truly terrifying. Also because of the infection my tracheotomy was delayed at least once, I was told the theatre had run out of time as I had to be last on the list for a day; also some investigations/physio seemed not to happen because of the need to swab down apparatus which takes time when staff are busy. This made me feel as if staff were reluctant sometimes to offer me all the treatment available but maybe I was over sensitive! By the way the way now I'm fine and do appreciate the care I received.

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Hana, you and your colleagues are the most amazing people. You saved our lives and you won’t to know what more could you have done. I would like to say thank you, for saving our (my) life. You are all great people.

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Hana- where is the hospital that you work in? Do they have a support group- we get loads of feedback from patients at both our support group and the post discharge clinic.

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Dear Hana

It's lovely to see that you have joined this site, I like you am a nurse who worked in the same intensive care unit (ITU) for nearly 10yrs and it is the single most amazing and humbling job that I have ever had the privilege to do.

Like so many people have said on here have already said, staff in ITU's are great at their job and the care that they provide, however there is always something to learn and the best people to learn from are those who have lived the nightmare and survived they own personal ordeal.

So like other members have already said, try and find a local group near you and go along to a meeting. So that way you can hear and see for yourself the struggles that each person has and then if you can get some help from a willing colleague to support you, who is also interesting in patient support maybe you could speak with Luckyone about setting something up.

If you would like to chat message me and I will give you my email, Lots of luck xXx

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I was really upset that they were quite cold if you asked any questions , plus I wasn't allowed to look at the computer of records on my child. Also they told me my child doesn't like her hair to be brushed as they tried while she was in a induced coma. When she was out of hospital she would scream if I tried to comb brush her hair even lightly. I wondered if she had be traumatised by the brushing ? Also I felt vey tired and didn't go to my child once when she cried and a nurse on duty started to stroke her and I felt it was intrusive and I felt like a bad mum. I was told I could feed her by the local hospital when she was discharged but then they said no as she could have aspirated I just think they could tell you more and have better communication.

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Hi Hana,

I appreciate you wanting to receive feedback, kudos to you :). You are a wonderful person and nurse!

My darling brother, 28, was admitted to the hospital due to jaundice, fatigue, and disorientation (no pain). It was grueling.....for him and for us. The first week of him being an inpatient was spent questioning him, questioning us, and no answers (from the doctors)...it was so frustrating. We were told he would be released within a couple of days and they didn't know what was wrong with him...after a WEEK! :(. His nurses were EXCEPTIONAL...he would tell them he loved them and he would always apologize for them having to help him go to the bathroom. What a sweet soul. Again, I'm skipping major details, but he was rushed to the ICU due to his breathing being "off" (this is what we were told)...His liver and kidneys began to fail and they realized he needed a liver transplant to survive. I will never forget how incredibly awful the doctors in the ICU were to him...it makes me cry just thinking about it. The nurses at the ICU seemed different than the ones in just the regular inpatient...they were not as loving and not as caring, which broke my heart. I understand being a nurse is an incredibly difficult job....but especially in the ICU, you are dealing with critically ill people and their families....sympathy and love is necessary. I can say that the people administering his dialysis created a VERY unique relationship with him and they were very loving to him. I am grateful for them. The doctors were not around (we are talking about a 10-12 bed ICU) and no one was ever there to answer our questions. One nurse randomly told us that we needed to talk to him about dying. WHAT????!! It was crazy.....This was a span of 20 days, so I am skipping things, but my heart ached for my brother and for the way he was treated by some of the nurses and doctors. Compassion, patience, love, and even a hug helps! :) My sweet, amazing brother passed away at the age of 28 in an Intensive Care Unit in Salt Lake City...days before he was to receive a liver transplant. I hugged him and kissed him as he crossed over. He is home now...

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