This is a new site I have only recently found myself- Hoorah!

[hoofman54]

I am a partner of someone who spent a long time in ICU - approx two and a half months - and then a further few months recovering in HDU/ general ward. Whilst I'm eternally grateful and in awe of the care given to my partner, I've had to come to terms with the fact I sometimes don't recognise the person that has come home to me. The psychological damage, the change in personality and many more differences are a constant reminder of the most horrific time of my life. The one redeeming factor that has kept me going is the support she is now receiving from her psychologist - (not always readily available) - which has been a godsend. This site has made me realise I'm not alone and hope we can spread the word in order to support each other and future survivors. The fact that partners, family, loved ones and friends are now being recognised as being a significant part of the suffering has also made me feel less isolated. The very nature of visiting ICU for such an extended period inevitably meant I witnessed patients that sadly didn't make it. I was never to see their relatives again. Please keep making people aware. Thanks.

[ICUsteps-Peter Partner ICUsteps]

Glad to hear the site has helped. We're actually holding our first conference in November and the response from healthcare professionals has been really positive. We're actually trying to get a bigger room at the venue so we can spread the message to even more staff that recovery from critical illness doesn't end on discharge from hospital.

I'm glad to hear your partner is getting psychological support. Despite the tremendous physical difficulties that can follow intensive care, for me the psychological aspects were far harder to deal with - all the more so when you believe you're the only person who's ever experienced these things. Thankfully time does help. I hope you and your partner will soon be able to put your experiences behind you.

[Barbarajoy in reply to ICUsteps-Peter]

is this conference open to volunteers and patients would like to offer my help if possible. i received so much from my coventry group and staff from walsgrave so i am now helping others been life changing for me thanks peter x

[Barbarajoy in reply to Barbarajoy]

could you let me no where and when please Peter in november

[ICUsteps-Peter Partner ICUsteps in reply to Barbarajoy]

Hi Barbara. Yes, the conference is mostly being attended by healthcare professionals but there's a good patient and relative contingent as well - an ideal partnership for establishing support groups.

The venue and Google map are on the conference page on our website along with the programme which is icusteps.org/conference

[Barbarajoy in reply to ICUsteps-Peter]

Be there and looking forward to be a part of helping all

[Luckyone]

Hi, I spent 3 months in ICU just over two & half years ago, most of which I have no memory of, but like you my wife and family went through the endless nightmare of not knowing if I would survive, the ICU staff were brilliant along with relatives of other patients offering support , my wife told me it was like going in to a different world walking through the doors into ICU, I consider I was the lucky one not knowing what happened to me, I was locked in a world of bazaar nightmares and hallucinations.

After leaving hospital I to turned into someone my family didn't recognize, I found it so difficult coming to terms with what I had been through, luckily my wife and myself got the psychological help we needed and as time has gone by the bad memories have faded, but are never forgotten.Fortunately it now slowly being recognized that both patients and relatives need support after such a traumatic experience, so hopefully the future will be better for all and not just the few lucky ones who find the support they need in sites like this and local ICU support groups.

[hoofman54 in reply to Luckyone]

Hi, your response, together with Peter's has made me feel so much better. I applaud your commitment and dedication in trying to make people aware of the 'after effects' of time spent in ICU for both patients/ family etc. My partner and myself have registered for the conference in November as we would be really interested in becoming involved with setting up a local support group.

[Luckyone in reply to hoofman54]

Hi, I glad to hear you feel so much better knowing you're not alone and have the support of this great community, it's nice to know you have registered for the conference, I'm sure it will give you the inspiration to become more involved, we started our local support group here in Hastings just over 18 months ago, I must say how rewarding I find helping others try and find some sort of understanding and closure for the trauma they have been through.

We will be attending the conference as representatives of our local group.

Best wishes to you and your partner in your continued recovery

Bill.

[Barbarajoy in reply to Luckyone]

i agree with you very much and want these volunteer groups to take off in coventry area so much