Hello

I came out of hospital 8 months ago after 3 months in ICU (2 in an induced coma). We started a support group and wish to come under Icu steps umbrella.

My question is about how best people have promoted their support groups. I mean in the way of getting those that would benefit to find out about the group. Has anyone found approaching local surgeries and GPs worthwhile? Samaritans? Citizens Advice?

We are trying to establish a icu visiting rota too.

There were so many inconveniences to overcome once I'd woken up - but I wish I'd had someone show me that recovery was possible - Alone, it felt like an unsumountable struggle to get back to normal at times.

Has anyone set such a scheme up and have you guidelines?

Thanks in advance for any feedback.

20 Replies

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  • Please try the ICUsteps own website, they have some useful info. icusteps.org/support

    Congratulations on being a fellow survivor and wanting to help other survivors.

  • Thanks Lacemaker - I have looked on ICU steps page. I was hoping to get feedback from anyone who had had success with breaking through the wall - whilst I was approached to help set up support group by the right hand, the left hand remains suspicious.

  • Hi Sepsur,

    I'll drop you an email and pass your details on to our CEO & Chairman who deal with all local group enquiries.

    We had our first ICUsteps congress last month in Milton Keynes to bring all our local groups together to discuss future plans for ICUsteps which will only increase the quality of service which is down to everyone involved volunteering their time for free.

    I helped start a local group in Hastings back in 2012 as there was no support available and as many who have read my posts on here will know my story, it was only becoming involved in a group that later became an ICUsteps group that made me realise how much support I could give to others, I left the group in 2014 to commit more time to the main charity after I had the privilege of becoming a trustee, the Hastings group sadly closed down last year for reasons that are confidential but it would be lovely to see it startup again in the future.

    Best wishes with your group.

    Bill

  • Thank you. We are small but committed. We also have really good support from staff in ICU and others in hospital. I would really appreciate some direction into how best to marshal our ( limited) resources & energies -

  • Hi! I have just started a group in West Yorks, we designed a poster and leaflets which were sent out to all the GP surgeries in the area, I also wrote to ex-ICU patients from the previous year. The group is advertised on the hospitals facebook page, website, by the Outreach Sisters, and at the ICU follow up clinic.

    I am a Sister in ICU, hence I have access to the confidential information, have you got a link with the hospital who would be willing to help? Our group has been really successful with 20-40 people attending.

    Good luck!

  • Thankyou fionadelahunty - we had designed a poster delivered to all surgeries but struggled to get past practise manager.

    We are getting referrals from Hospital with the icu physio & outreach fully on board - and we realise that many people will come initially - get the answers they feel they need - then trundle on on their own. We have a solid core of 6 with others coming and going. It's is now only our 4th or 5th meeting - so it's really early days. We believe that coming under the ICUsteps umbrella will give us more 'weight'.

  • You doing to be doing well! However I agree that the ICU steps umbrella might validate the group a little more. It is such a shame that the surgeries haven't been more supportive.

  • Could our Outreach nurse approach you for best practise?

  • If this is to me then yes no problem! We definitely found the letters the best way to contact people, however it is very time consuming, I am lucky that my unit managers support the group and allow me the time.

    Edited to add this is still Fiona, I am now on my phone, my computer must have logged me in through fb and shown my name, something I didn't intend to do!

  • Could you ask if anyone is interested in my project please?

    Hi, after my husband told me of the bizarre and sometimes frightening dreams he had during his 2 week coma last year, I decided to collect as many as I could for a book.

    Do you have any that you would like to share? Or know anyone that might?

    Contact me here.

    facebook.com/killingmarmalade

    Thank you

    Charlotte

  • Unless you have been in a coma and suffered with the dreams, they couldn't be described or understood by anyone who hasn't been through it. People want to forget them they are that harrowing and why would you want to write a book about them???

  • Because knowledge is power, the more you know about cause and effect the better equipped we are to understand. IMHO

  • Understand what why we dream in a coma that's easy because we are pumped full of drugs that's all the knowledge we need to know, nothing is going to change that. But the dreams people have when we are in a coma are not knowledge they are just all different.

  • It depends on what you mean by knowledge. Knowledge is a relative term and as such is quantifiable. How much do you really want to know? Yes, we are pumped full of drugs, most of them are powerfully psychoactive, pentobarbital, fentanyl, ketamine, morphine and others. All of them produce hallucinations, combined the dreams can seem more real than real. As you say, people all have different dreams but they also have many elements in common. If that's all you need to know, or want to know, job done, your journey is over.

    The question, my question, is not why we dream it's why do we dream what we dream? If you are able to dismiss those dreams as entirely drug induced and therefor 100% delusional then you've reached the end of any enquiry and have no use for any additional knowledge.

    If you're able thereby to forget them then you're more fortunate than most.

    Inner space is as infinite as outer space. I have found that many, actually all, of those that have experienced deep coma for any length of time awake with a whole laundry list of questions. Just saying, 'It's normal, don't worry about it.', generally doesn't satisfy. If you have emerged from a coma and accept all you experienced as drug induced and therefor have no further need for information, well good for you. Congratulations on your total recovery.

    For those that still have questions, concerns, disturbing flashbacks, persistent after effects, etc., there are answers, or at least educated theories, to be found. Google the term, 'Emergence Phenomena', for papers and articles published by medical professionals and mental health researchers.

    Best Wishes,

    David.

  • Is the basis to this book slightly exploitative and voyeuristic - does the book try to connect any of the sequences of dreams? I very quickly connected up why I dreamt about certain things & people. For instance, There was often a rally of gunfire as the backdrop of my dreams. As the nurses pulled the plastic aprons off the rollers - it sounded similar to a volley of gunshot, I later discovered. I often dreamt of water - my hospital bed moved like being 'on' water etc...The people I dreamed of were, at some stage, sitting at my bedside or being discussed by those sitting there. The places I dreamed about, although I had never been, involved or were connected to people I knew and again were being spoken about or mentioned to me. So if the book embraces an idea of cause and effect so that people more 'questioning' than me can find peace - great. On a practical level, I know some other expatients had hallucinations thinking they were being hunted down by marauding gunmen - I told everyone in ICU about my connection of reality with dream - they all went "oh, so many have a similar fantasy, I wonder if we can quieten the rollers" but they are still the same....

  • I do understand why the dreams take over in someone's life especially whilst they recovering. But I never focused on them because I was put in an induced coma through liver disease and when I woke I had 3 years of fighting for my life until I received a life saving transplant 8 months ago. I will never forget the dreams they still come to me like I dreamt them last night but I just don't think they can be explained in such detail for people to understand and it's great someone wants to try and help others but I think focusing on writing a book from a loved ones point of view of seeing someone they love in a coma and the recovery, effects afterwards would make more sense. I don't even think I could do the writing of the dreams justice and they are an inconvenience more than anything. X

  • My husband couldn't wait to talk about them and I have had over 30 people who also wanted to and have contributed to my book.

    I've been told that it's been very cathartic to do so and my reasoning is that I was told that Rod wouldn't remember them and was shocked and worried when he did, vividly. So this way it might, for some people, make it seem more 'normal'.

    Also not all the dreams I've had have been frightening, a lot have been strange and some funny.

    Rod says the new series of Twim Peaks is basically a coma dream...

    I understand if you don't want to share your experiences, but you'd be surprised as to how many do!

    C x

  • I messaged you on Facebook,

    Best Wishes,

    David.

  • I've come across your link before - whilst I like the idea - I wouldn't particularly like to put my details to it. My dreams were disturbing & depraved and not created from my real life experiences or fantasies. Although I realise they weren't real and that I cannot control what my mind churns out - I feel they are still 'wrong' - I found myself in situations and countries that I have never been - anonymously - I might consider it.

  • Thanks kp2016

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