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.

10 Replies

  • 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.


  • 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!

  • Thanks kp2016

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