Following up from Discharge

[eddie1968]

Just a question for the community. Is following up patients a good idea or does it make people dwell and not move on from their time in ICU?

The reason I am asking I was an ICU patient for 4 weeks in Glasgow 3 years ago. I had no post discharge support and took me a while to recover. Took me a year to get over the physical aspects and 2 years to get over the PTSD after being taken off my ventilator and having a tracheostomy tube in place. I had the usual hallucinations and paranoia in ICU and took me ages to come to terms with my experiences. I never really asked for help and put a front on telling people I was fine but not especially my disturbed thoughts. Now maybe I am a stronger person than others but I am wondering would any help have made any difference? Maybe yes and maybe no, I will never know. Has anyone got any stories of their follow up care if they had it and I would be grateful to read them. Thank you all. Edward

[barbs58]

I think it's an interesting question, and of course one we can never know the answer to as we can't change the past. I'm sure things are better now there is more recognition of the problems patients have after a period in ICU, and thanks to the great work of ICU steps to deliver booklets to ICUs for patients and relatives, and their great website.

icusteps.org/

There is more now on the academic side of research into patient's experience of ICU, and our views are being sought on these issues too.

I was in ICU for 8 days and then 4 weeks on the ward. I would say my recovery (from Severe Sepsis) was about three years in all. Some of that was caused by the two steps forward, one step back of repeated surgeries; and some was recovery from the physical weakness of having been seriously ill, and some was the consequence of PTSD which again is now much more recognised.

When I first came out of hospital in 2007 I did search the internet for my own experience and found very little, but eventually I discovered ICUsteps which was such a relief - like most survivors I did think I had gone a little mad with the hallucinations, paranoia and flashbacks and so on, and it was such a comfort to hear that these things are 'normal' and common to ICU people. Also physical things (like my nails have spots on, and my hair falling out) which we weren't warned would happen afterwards.

I personally was lucky enough to be referred for NHS help with the PTSD, and my therapist recommended Mindfulness which has really changed my life, particularly in dealing with the anxious thoughts that ICU leaves you with. I'm sure people have found different things helpful afterwards, and some of it must just be time healing most things?

I think you should feel proud of your achievements as a survivor when it was only 3 years ago.

I'm also interested in what other people think. I would definitely have preferred a proper system of follow-up myself. I did make my own by arranging a debriefing visit to ICU some time later, which was very helpful, but I had to do it all myself. People who didn't need it wouldn't have to take it up, but it should definitely be offered to everyone who's been in ICU.

[crazyLiz]

Hello Eddie 1968,

my story is similar to yours, I've not received any type of follow up (it's been 15 months since my "experience"). my gp didn't even know until I told him. I live alone and really struggled after discharge, these days I'm doing okay but the psychological effects are still lingering. liz

[Luckyone]

Hi Eddie,

For me follow up was life changing, I had spent 3 months in ICU almost 5 years ago so critically ill my wife was told I had a less that 10% chance of survival, which left both wife and myself a physical & psychological wreck, fortunately my niece is an ICU nurse in the hospital I was in, seeing the non existent support she spoke to the consultant who arranged a follow up 3 months after discharge, he was so helpful and referred us for psychological counseling and another follow up 3 month later where I was asked by the ICU nurse at the follow up if I would speak to a patient who had been in ICU for 2 months and was feeling very down, on speaking to him it made me realize we all go through such a traumatic experience with very little support, so I was determined with the help of my wife and niece to start a local support group for ex-ICU patients & relatives which we did in early 2012, I also spoke at hospital staff training days, at a local health conference and my wife and myself done a talk to the ICU nurses that treated me.

In late 2012 we became an ICUsteps local group, leading to me becoming more involved with ICUsteps and becoming a trustee of the charity in 2013 and speaking of my experience at their first ever conference to around 200 delegates, I continue to work with the charity in their efforts to raise awareness and their assistance in research, so for me follow up really made a difference, had I not had it I'm not sure where I would be now.

Best wishes for the future to all my fellow survivors.

Bill

[eddie1968]

Thanks for all replies so far, appreciated. Yes I have to agree that I found ICU steps on the internet a while after discharge and got a lot of online help then post recovery. Only sad thing is the nearest ICU Steps group is miles away in Dundee. I think in the Greater Glasgow area with all it's Acute Hospitals we could get a group up and running. Again thanks. Edward

[AnnieBananie]

I am in the US and had an very similar experience with the same general time frames (4 weeks in ICU, another month in pulmonary rehab and a year of physical recovery). I received NO emotional support or therapy during my ordeal or any follow up after and feel it would have been a tremendous help. I suffered unnecessarily for years knowing something was not right but assuming it must have been my personal inability to cope.

[eddie1968 in reply to AnnieBananie]

Just goes to show we all thought we were crazy when it's now recognised as a normal reaction to intensive care. I only realised the extent of my hallucinations and paranoia when my family enlightened me about my behaviour. "The nurses are going to kill me..." was my common phrase and I definitely believed it at the time. Take care, you are not alone.

[muncii]

My recovery from ICU at the end of 2010 (I had a Boerhaave spontaneous oesophageal rupture) was complicated by further surgery three months down the line, for a twisted bowel. I'd say it took me nearly three years to recover physically and regain my strength. However, as far as PTSD and emotional recovery is concerned, I had no support from the NHS/GP though to be fair, I didn't ask for any. A couple of months ago I decided to have some time-limited counselling (private, not NHS) because I felt ready for it. I have used the sessions to talk a lot about my ICU experience and its consequences. It has been very helpful.