This is not a decision I came to easily and many many tears were shed as I mulled over what the best decision was.
ICUsteps is a fantastic charity and one I found so rewarding to be involved in from being an attendee at a peer support group, helping set up a national set up in Scotland, bringing ICUsteps Edinburgh online as a virtual group during the pandemic and then as a trustee with ICUsteps. I will get back involved in the future but at the moment I cannot commit to help them when I need to help myself first.
ICUsteps is a charity that was set up by an ICU (Intensive care unit) nurse and one of her former patients. Its aim is to provide support for patients, their families and friends after they have had a critical illness which required them to be in an intensive care unit. The charity has affiliated groups across the UK. I attended ICUsteps Edinburgh at their face to face meetings which then went online when COVID hit and I took a more active role in the running of the group.
Living with severe asthma I have been in ICU so many times,. I cant actually tell you how many times I have been admitted there, the ventilators, non invasive ventilators, lines etc. For me it is part of living with severe asthma unfortunately. I was never offered any support post ICU ever and came across ICUsteps quite by chance when I was asked to come and speak to ICUsteps Edinburgh and the Lothian Critical Care Unit about my work doing patient and public involvement (PPI). After finding out about it I new I needed to attend the meeting as I had so many unanswered questions and demons I was battling from my experience being there.
After getting so much out of the group my role evolved from an attendee to being part of the committee. Now something I regret doing. I put myself forward for chair of ICUsteps Edinburgh as had all these ideas for moving the group forward and to help more people. My time as chair was difficult and found road blocks at every turn.
In running a peer support group there is a critical need for confidentiality and privacy no matter what. People are telling you their inner most fears and need to know that they have a safe space to speak. For me this confidentiality was breached, a decision I had made to resign as chair of ICUsteps Edinburgh was spoken about to other general members outside of the committee without my permission. The person who was on the receiving end of the news messaged to say they were sorry I had fallen out with everyone and that I was leaving. What bothered me most is that what they had been told was not correct, but also that the message came only a few hours after resigning as chair of ICUsteps Edinburgh. When I challenged this no one owned up but I was told the person who did it was very upset about it. I was not told who this was and I didnt get an apology or anything. After many many months I finally found out who it was- this person had lied many times to my face about this saying they would never do anything to breach confidentiality and break trust. If this was not bad enough the person responsible took over as chair of ICUsteps Edinburgh very quickly and obviously did not have any concern about their behaviour otherwise they would have said perhaps given what had happened someone else should become chair. In fact this person is still chair of ICUsteps Edinburgh and sits as a patient representative with Scottish ICU Society.
As a result of this and all the issues I had been having in that year I ended up in a really fragile state. I was anxious, not sleeping, constantly second guessing if what I was speaking to people was being passed on especially when I was speaking about experiences to clinicians or researchers. PPI has been what was keeping me going but the anxiety and panic I would get when I had to go to a meeting was crazy, I often found I couldn’t attend meetings because of this. Any mention of ICU or even emails about ICU as well crippled me with anxiety and fear that my experience as a patient would be spread. I resigned from all PPI groups I was involved in with ICU and also the general Clinical Research Facility PPI group in Edinburgh because there were members of ICUsteps Edinburgh in the group. Any association with them I could not handle. It would have been a lot easier had the person admitted what they did, apologised and also be aware of what they had done, this never happened so I never got any closure. This person is now just living his life as though nothing happened.
Due to my mental state about ICU I was not able to fulfil my role as trustee for the wider charity. This gutted me, I kept trying and trying to sit down and do some work but even at home I would get this knot in the pit of my stomach. I tried my best to over come my fears and anxieties but I couldn’t. It was unfair of me to stay in the role of trustee and not pull my weight, I also have not been able to give them a time line of when things will be better. I do feel like a weight has been lifted from my shoulders.
I cant thank everyone at ICUsteps and the board of trustees enough for the support they have given me during this time. I do hope ICUsteps Edinburgh will take action and learn from what they have done. I made some recommendations about how the situation could have been handled better and some more formal complaints process so that there is a record of all communication because just now I have texts messages some emails and some social media messages about the issue. I have ICUsteps Edinburgh aware of the impact on me but have had no acknowledgment of that email.
I do want to emphasise that ICUsteps have been great. This is isolated to Edinburgh. I felt it was important to share what has been going on as I have always been open here about things that bother me.
ANONYMOUS-ASTHMA 