How understanding were the consultants/staff when you explained about the your experience of icu psychosis?

[karen1234]

I found that whilst they had had patients with this before, their priorities were to make me physically well - understable of course. The post icu interest and follow up was poor.

[mike999]

My experience was also a bit patchy. I have no recollection of ICU after I was sedated, and my first real memory was in the stroke ward some 2 or 3 days after I was transferred there. I was lucky that my psychosis was minor and brief. The main issue was trying to get my head around the fact that I was missing a month, and the emerging recollection of some very unpleasant dreams.

Bizarrely it was only long after I had left hospiital that I discovered the ICU Steps website and advice booklet which covered all these things. My partner, who was in hospital every day, was never pointed to it, although much of the advice she received verbally from the ICU staff was based upon it.

I was assured the booklet should have been brought to my attention, and to my family's, and this was an oversight. My advice to ICU staff is to be very forceful with relatives - "This is something you must read!". Having the booklet in the family room for people to come across and browse is not enough. Similarly at the first sign that patients can comprehend what is going on someone needs to read the booklet to them, and perhaps several times - relative or volunteers can help. I was incapable of reading anything for several weeks.

In short, ICU Steps appears to be a great resource - I think there needs to be some better structure in how and when it is utilised.

[karen1234 in reply to mike999]

The team and my family had no idea that I was semi aware during my whole ICU stay. The very real delusions were more traumatic than any of the health issues to me.

I found that staff were interested in the psychosis aspect of the ICU experience but focussed upon my recovery.

Vague references were made to groups and "keeping an eye on you" but none materialised.

In a healthier and more assertive time, I would have pursued the options but clearly that wasn't going to happen. I was too fragile.

I sourced support through my GP afterwards which helped and time has helped fade some of the worst memories.

I don't think that ICU psychosis is taken seriously enough when in fact it affects, I am told, over 30% of patients.

[Zara1]

When I was in ICU, the staff gave my husband leaflets all about how to care for a loved one once they'd been in ICU, there was also a leaflet about ICU psychosis. He had read these even before I'd left the ward, so he was in a position to understand what I was feeling. Once I was on the road to recovery, I was given the leaflets and it was explained to me quite quickly afterward, that the dreams and hallucinations were almost common place. It did reassure me that I wasn't going mad!!!!!

I can't fault the follow up care I received either. I was taken back into the ward a few months after and was shown around and I was asked if I felt I needed psychiatric help with the way I was feeling. I told them I did and I was referred. I received about 5 months of counselling which was invaluable!

After reading some other stories, I realise how fortunate I have been, with the care I have received. Well done Ninwells Hospital, Dundee!!

[Mike-N]

I was given a booklet (although I do not remember it) after I left ICU, and it was only on the ICU followup nurse's second visit that she told me about the book and asked me about my dreams. She is the only person I have spoken to in the whole of Abderdeenshire who seems to understand how we suffer, but she is just one hard worked nurse on her own, so unless she receives some backing she/we have not got a chance.

As to the question my consultant or any of the NON ICU staff have not got a clue, so how can they be understanding?

Yet this sort of thing has been happening for decades, so why have they not tried to help us instaead of leaving us on a mental junk heap?

[karen1234 in reply to Mike-N]

I found that there was some understanding but no investment into psychological rehab...just one meeting some weeks after and promises of follow up that never materialised.

I sourced CBT through my GP but am left with a feeling of unfinished business...lack of closure on what happened. Maybe that is impossible anyway.

I believe that this group should lobby for more funds and and recognition to address a serious lack of research and understanding.