Help please.

My local hospital used to have an icusteps support group.

In their wisdom they decided to stop being under the ' umbrella ' of icusteps. Thus there is now no support group to go to.

At some stage they say " when they have worked out the format " they will restart with drop-in sessions, but keep it " in house ". Apparently committee's frighten them.

My problem is? What can I and other survivor's in my area do now?

9 Replies

  • Hi there,

    Firstly, this is very upsetting news as it is similar to experiences I have had. I am interested and in the first stages of looking into support after ICU and what can be offered for people as trauma should not be dealt with alone.

    Where abouts are you based?

    Many thanks and I hope we can keep this conversation open and ongoing.

    Kate x

  • Luckyone can you help?

    Lacemaker have you looked online for a support group near you? There are several around the country xx

  • Luckyone is already aware of the problem as is ICUsteps. The nearest group to us have said that we were not welcome after one visit. Unfortunately they are under the same trust.

  • Very upsetting news for you and your other ITU survivores. How awful to say you are not welcome. How comes. . . ? That is so unkind and doesn't make sense. Have you thought of starting one yourself with the help of Luckyone and ICUsteps.

    My thoughts are with you. Hugs

  • A group to come under the umbrella of ICUsteps has to be run by both health professionals and ex-patients and relatives. My problem is that my hospital withdrew all medical support and basically closed the group down. If I was able to start a new group, I would have to find Health Professionals who were willing to come for free & were not linked to the local Trust.

  • That is so very rotten. What was their reason for doing such a selfish thing. Do they not understand how important support is for survivors of ITU is. If you need to chat we are all here for you that's the best I can offer at the moment. Could you visit the hospital powers that be and demand its continued? Hugs for you keep strong. I understand as my nearest support group isn't close.

  • Tiaclydebonnie Thank you for your support & understanding.

  • Hello Lacemaker,

    The news of this group's closure came as a disappointment, however, I've spoken to the hospital and having learning of the full circumstances I've been greatly reassured by the services that they have in place, which are already more comprehensive than most UK hospitals offer, and the plans for their future development.

    As we've discussed previously, the greatest benefit of support groups is that they give patients who’ve not spoken to another ICU survivor since leave critical care the opportunity to meet others like them and finally realise they’re not alone in what they’ve experienced. Support groups are not the only means by which this can be achieved and indeed we've seen numbers at other groups drop as this need has been met through improved hospital rehabilitation services. Though it's a pity for the group members on a personal level, it's actually a positive that the patient need is being met earlier in their recovery.

    I hope you can appreciate these points and take solace in knowing that patients will continue to receive support. The debt of gratitude we owe to critical care is something many survivors never feel they’re able to fully repay, but having been fortunate enough to be given a second chance at life, making the most of that second chance with our friends and family can repay the debt equally as well.

    Your ongoing support for ICUsteps and your local hospital is greatly appreciated.

    Best wishes,


  • It would appear that I have inadvertently upset and caused concern among the community. Please believe me when I say that this was not done intentionally. All I wanted was an answer to what I thought was a simple question. HealthUnlocked is a brilliant way to help fellow survivor's of ICU, including myself, and the last thing I want to do is bring it into disrepute. So please accept my apologies for any hurt and upset I may have caused.

    Thank you