ICU DIARY KEPT

[wullie-thomson]

Hi I was in the ICU on September 2021 with Covid Pneumonia. I Swas on a ventilator for 13 days and had really bad Delerium at thevtime and still cant stop thinking about what i was seeing still to this day. I spent 7 weeks in hospital due to Sepsis as well. I have just seen something about a diary being kept for people who were in the ICU and is normally given to the patient after they leave . My question is has everyone else been given a diary as I have not been given this diary . Thanks for any replies Thanks William Thomson

[Sepsur]

If you were in ICU during the pandemic or whilst there was a restriction on visitation from family, many ICU depts discontinued ICU diaries because there was a concern of cross contamination- I did receive a diary but I was in ICU some time ago.

You can request your notes - FamilyHistorian is familiar with procedure to get notes 😊

[wullie-thomson in reply to Sepsur]

Hi Thanks for letting me know. I have asked for this information today and they have replied that they will look into it for me thanks for your reply.

[wullie-thomson in reply to Sepsur]

Hi thanks for replying to me . I have just asked for these diary's but whether I get them is a different story as I've struggled since I got out of hospital to get some notes and scans. I also have found out a lot of things I didn't know I had or as I've been told it's all mistakes that's been made in my notes. They said I had a subarachnoid hemorrhage and a subdural hematoma and blocked kidney and lymphoma. My notes are a disaster and it has affected my mental health as I have skullbase lesions and blocked arteries in my neck for years on my scans but I've never been told . I got a private scan done on holiday which shown up a 14mm lesion on the skullbase and need further evaluation with MRI. I have now been referred to a neurologist after I changed my GP as I have been telling the hospital and my old GP and ICU Staff that I can see this stuff in my scans I have already but they ignored me. It's been an awful fight from I got out the hospital trying to work out when my face got damaged and scarred in the ICU. I know there covering everything that happened to me up but I will get to the bottom of it.

[oggyy]

my wife spent 4 weeks in ICU followed by another 4 weeks i the High dependency ward and then another 4 weeks and 4 days in another hospital due to a kidney pipe ( ureter ) being damaged during her first operation. I started my own diary beginning with when my wife’s GP incorrectly diagnosed what was wrong with her. The diary makes uncomfortable reading and she has yet to read it. She is also writing her own personal stories about what she remembers about her nightmares while in ICU.

[wullie-thomson in reply to oggyy]

Hi nice to hear from you and I'm sorry to hear what your wife went through. I have been getting my medical notes since I got out hospital only to discover they have got down in my notes that they done a ct scan of me in the coma which showed bleeds on the brain and when I've asked about it they are saying its not me and its someone else. They deny its even in my records and my Gp also denied it . I have shown Icu complaints this and they are not interested. My face was all damaged in icu and left all scarred because the first 3 days they didn't have staff to do head turns and left me face down with the tubes eating into my face. I went for a private scan in Morocco while on holiday which is showing up a 14mm skullbase lesion that needs an Mri to find out the cause of it. I had already told them I could see this in my scans from 10 years ago they have missed and blocked arteries in the back of my head and neck. I have now changed Gp and am waiting on a neurologist appointment and MRi now. Because I had bad Delerium they have tried blaming my mental health and post ICU stress. I already have all my Ct scans and am going through them until they actually listen to people. I know I'm still not right and have meant to have seen other services leaving hospital like speach and language therapy as my voice just fades with the tracheostomy. I have seen none of these services and it's been about 15 months and I have never been seen by anyone getting out of hospital. They are messing my mental health up not giving me any answers or apology of how this has happened.

[wullie-thomson in reply to oggyy]

Hi thanks for replying to me . I have just asked for these diary's but whether I get them is a different story as I've struggled since I got out of hospital to get some notes and scans. I also have found out a lot of things I didn't know I had or as I've been told it's all mistakes that's been made in my notes. They said I had a subarachnoid hemorrhage and a subdural hematoma and blocked kidney and lymphoma. My notes are a disaster and it has affected my mental health as I have skullbase lesions and blocked arteries in my neck for years on my scans but I've never been told . I got a private scan done on holiday which shown up a 14mm lesion on the skullbase and need further evaluation with MRI. I have now been referred to a neurologist after I changed my GP as I have been telling the hospital and my old GP and ICU Staff that I can see this stuff in my scans I have already but they ignored me. It's been an awful fight from I got out the hospital trying to work out when my face got damaged and scarred in the ICU. I know there covering everything that happened to me up but I will get to the bottom of it.

[Copse77]

a diary was kept for my brother when he was in iCU for over 2 months in an induced coma with sepsis that caused all his organs to fail so he was put on ECMO that saved his life. During that time I visited him every day. He did receive a copy of the diary. Even now 5 years on I can’t stand to look at the photos as it bring back a lot of traumatic memories for me. I do work with other families to provide information and advice and give blood as a way of thanking NHS. My brother received several transfusions. He can read his diary and did.. I try now to look forward knowing he is doing well. Good luck with your recovery.

[wullie-thomson in reply to Copse77]

Hi thanks for replying to me . I have just asked for these diary's but whether I get them is a different story as I've struggled since I got out of hospital to get some notes and scans. I also have found out a lot of things I didn't know I had or as I've been told it's all mistakes that's been made in my notes. They said I had a subarachnoid hemorrhage and a subdural hematoma and blocked kidney and lymphoma. My notes are a disaster and it has affected my mental health as I have skullbase lesions and blocked arteries in my neck for years on my scans but I've never been told . I got a private scan done on holiday which shown up a 14mm lesion on the skullbase and need further evaluation with MRI. I have now been referred to a neurologist after I changed my GP as I have been telling the hospital and my old GP and ICU Staff that I can see this stuff in my scans I have already but they ignored me. It's been an awful fight from I got out the hospital trying to work out when my face got damaged and scarred in the ICU. I know there covering everything that happened to me up but I will get to the bottom of it.

[NSMOD]

I did receive a care diary that each person that nursed me in ICU made. Makes scary reading but I am here to tell the tale thanks to them and their colleagues and the prayers of my family, friends and may others I don’t even know

[wullie-thomson in reply to NSMOD]

Hi thanks for replying to me . I have just asked for these diary's but whether I get them is a different story as I've struggled since I got out of hospital to get some notes and scans. I also have found out a lot of things I didn't know I had or as I've been told it's all mistakes that's been made in my notes. They said I had a subarachnoid hemorrhage and a subdural hematoma and blocked kidney and lymphoma. My notes are a disaster and it has affected my mental health as I have skullbase lesions and blocked arteries in my neck for years on my scans but I've never been told . I got a private scan done on holiday which shown up a 14mm lesion on the skullbase and need further evaluation with MRI. I have now been referred to a neurologist after I changed my GP as I have been telling the hospital and my old GP and ICU Staff that I can see this stuff in my scans I have already but they ignored me. It's been an awful fight from I got out the hospital trying to work out when my face got damaged and scarred in the ICU. I know there covering everything that happened to me up but I will get to the bottom of it.

[NSMOD in reply to wullie-thomson]

I really hope you do get to the bottom of things. It sounds like you are after your medical notes as opposed to a care diary ?

[Nala8573]

yes I was given one in 2021

[Grooming]

Hello William I was in ICU and was not given a diary, I really wish I had of been given one

[TBIcaregiver]

Hi, my son was in a coma in ICU and I only realised he had a diary when it was left on the table at the end. It was open on a page where the nurse had written " we are waiting for you to wake up". I had to ask for this when he was discharged as it isn't always given automatically

[ElleEmBee]

no I haven’t and I was in icu for 125 days and would have appreciated this to help with my ptsd dreams and memories.

[wullie-thomson in reply to ElleEmBee]

Hi there I wasn't given this diary so I asked for this the other day but they did not send me a diary. They ended up sending my hospital notes out again which I have. They have put in my notes a ct scan was done in October 2021 when I was in ICU with Covid, but the hospital put down that I had 2 brain bleeds and kidneys blocked and when I already asked them what this was all about they then told me it is not my scan and it was an accident and its the first time it's ever happened in the NHS history and there changing this but nobody has even gave me an explanation or an apology of how this could have happened. They have tried to hide this but even when I asked for the diary the other day they have sent out my ICU notes again instead of this diary and in these notes they sent out it still states I had a ct scan while in the coma and it states about 2 small brain bleeds 17 month later. I would tell everyone to ask for their scans and notes back from the NHS andlook over your stuff yourself as in my notes I have found out I have a vascular tumour on my spine nobody has told me about or monitured from 2009 and they have got marked down I have had blood cancer from 2015 which I don't think I do as nobody told me anything about any of this stuff. I'm still trying to get this mess sorted out still from October 2021. It has been a severe struggle trying to get anyone to listen to me and totally made my mental health worse since having Delerium of a distressing nature in ICU with some of the things I was seeing. I would advise everyone get your notes back.