Peer support for families of ICU survivors - ICUsteps

ICUsteps

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Peer support for families of ICU survivors

Rrs789 profile image
8 Replies

We have created an online programme of support for ICU families. We are now looking for people to use their experience to help other families by becoming a Peer Support Volunteer.

The picture below shows what peer supporters will be doing:

Please email ICUpeersupport@kcl.ac.uk for more information.

Thank you in advance.

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Rrs789 profile image
Rrs789
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8 Replies
Gooddaysunshine profile image
Gooddaysunshine

Sounds like a very good idea, and every success with it. As an ICU survivor, I have difficulty in getting my family and relatives to accept, or even talk about, what has happened to me.One question I would have - is that when your programme is fully up and running, how to direct traumatised families towards it in a gentle, rather than an overt or seeming to push, fashion?

Rrs789 profile image
Rrs789 in reply to Gooddaysunshine

Thank you so much. It is exactly families like your own that I believe might benefit from some support that is specific to themselves (rather than only the patients). You make a great point though, I definitely would want to push anything on any family members at all. The hope is that this will be an optional supportive programme that people can join if they want to.

Currently, we are looking at the best ways of reaching family members - I am thinking that we will offer it in the hospital but open to suggestions. Thank you for taking the time to talk.

Hi. Sounds a good idea, but to some degree that is what this site does. It also difficult to advise as everyone's experience and recovery seems different. On this site we can leave our thoughts which either people read and agree with or dont agree with in a fairly annonymous way. ICU is probably the most unusual/extreme experience you can have and it does take alot to get your head around and over the experience. I was lucky my ICU team were very caring, my after care in a rehab community hospital was ace, and then a final 4 week period being spoilt in a carehome before going home really helped my emotional recovery.

I have now been concentrating on my physical fitness and trying to improve fatigure and breathlessness. But compared to two years ago I am alot better and try and go out to see friends and not dwell on the events in 2020 too much. I wont forget it or the team that kept me alive.

Rrs789 profile image
Rrs789 in reply to

Thanks very much for replying and engaging with my question. Yes, I agree this site is similar - we are hoping to try and create something specific to family members as I hear they have a difficult time dealing with their relative going into ICU too. And as with every patient, every family will have a different experience. We are testing out this programme to see if it works and keen to get all feedback that we can. Thank you for sharing your experience. I'm so glad you are improving so much.

in reply to Rrs789

Ah yes for the families its a worrying time. They are often told the patient is likely to pass (in my case on at least two occassions). They can feel frustrated in not getting regular up dates, but in my case I had one next of kin who was point of contact and had regularly up dates from the icu team. I was not allowed visitors because of covid, until right towards then end of my recovery in ICU when my next of kin was allowed to visit.After I think the family does not always understand what you went through and its not like flicking a switch that yesterday you were sick but today you must be better because you are home.

Unless someone has been in ICU they do not appreciate what a weird & wonderful place it is.

V1ckyr73 profile image
V1ckyr73

Hi there. Would be really interested in hearing about the pla for support for families of ICU patients. Husband spent 12 days sedated in ITU in May/June and he and I are both struggling to get our heads around it all. Would be grateful for any advice and support. Thank you.

Sepsur profile image
Sepsur in reply to V1ckyr73

There is also an on line zoom group specifically for families & friends, that has been operating since lock down cc-sn.org/drop-in-meetings

Back_to_reality profile image
Back_to_reality

My family were very supportive when I was in the ICU. They were worried sick to be honest. None of them had any idea about the whole ICU experience, but were focused on the immediate and sudden illness that was threatening to kill me.

It was only when I was awake and talking nonsense to my wife that it then dawned on them that the drugs were at work. The fact that I improved markedly each day did help.

On a personal level, this forum did help me a lot as I worked my way through the flashbacks and the recovery. My family were very keen to help and talk about it, but I don't think anyone would truly understand it if they had not experienced it themselves.

I'd be happy to help with this, but I'm not sure how much of my time I would be able to commit.

I will drop you an email though

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