For Intensive Care Unit (ICU) patients and their families, the trauma and life-changing implications of critical illness and injury can make discharge from hospital an isolating and destabilising experience. But now, thanks to RBWH Foundation Grant funding, there’s expert advice and peer support on hand – no matter where you live or where you are on your recovery journey.
Established by Clinical Nurse Meg Miller, the Post ICU Peer Support Group Program gives survivors and their families from RBWH and Redcliffe Hospital a space to get advice, explore experiences and share the ups and downs of recovery.
“Many patients, as well as families who have held a bedside vigil, have a posttraumatic stress disorder (PTSD) type experience from even a short ICU admission,” Meg says.
“Recovery can last for years, and some patients’ lives never go back to normal - they may never be able to return to work and may have to make significant changes to how they live and function.”
While it's been nearly three years since Bribie man Kim Austin was hospitalised, life as he knew it has changed forever.
“It all happened so suddenly, as these things do. I started to get a bit of a cold, two days later I felt really sick and, when a friend called in to see how I was doing, she took one look at me and called triple zero. I woke up days later. They’d had to put me into a coma and intubate me, I was on a respirator, my lungs had collapsed – the whole deal.”
Close to death and with no visitors because of COVID-19, Kim’s 12-day ICU stint is a blur.
“I applied to Queensland Health to get a copy of all my documentation, from admission to discharge, so I could fill in the gaps. Anything to help me with the PTSD, the nightmares – I’d even had delirium when I was in ICU, so my memories are so confusing.
“I applied to Queensland Health to get a copy of all my documentation, from admission to discharge, so I could fill in the gaps. Anything to help me with the PTSD, the nightmares – I’d even had delirium when I was in ICU, so my memories are so confusing.
“Then, when I came home, I had really bad balance, cognitive decline like you wouldn't believe - even now I have trouble getting words out of my head and I'm slow with everything I do. I was experiencing all this stuff but I had no one to call; I couldn't call the ICU so I had to rely on my GP, and these symptoms were all news to him.”
As an Intensive Care nurse for the past 25 years, and parent to a child with chronic illness, Meg recognises that quality of life, post-ICU, is as important as survival itself.
“Feedback from families is that they receive wonderful care whilst in hospital and during their rehabilitation but there is no support for them once discharged home; many have ongoing trauma and issues, but no one seems to understand what they’ve gone through and continue to go through.
“Research has shown that just being able to speak to another person who has had a similar experience enables people to understand some of what they’re going through and can help them to accept it. Things like, ‘why am I still experiencing brain fog 12 months after my hospital stay? Why do I still have problems with my balance? Why am I anxious about going out to socialise?’”
Having won an RBWH Foundation grant, Meg and her colleague Luke Tung now host a combined monthly meeting with one group at RBWH, one group at Redcliffe Hospital and remote and rural attendees joining via telehealth from across Queensland.
“A guest speaker attends the first part of the meeting to discuss a topic of interest to the group's recovery, everything from fatigue, brain fog and muscle loss to grief and anxiety,” Meg says. “Then we have time for questions, group discussion and general sharing.”
While Kim Austin has managed to piece together those 12 ‘lost’ days in ICU, their impact will be felt lifelong.
“I live right across the road from the beach and, before this happened, every morning I'd go for a walk for a couple of kilometres on the beach, come back, go online and work. I was a semi-professional photographer and did marketing, web design, and social media posts for a North American author. Now I’m medically retired and in almost three years haven’t been able to get back down onto the beach.
“What I’m experiencing is known as post-intensive care syndrome (PICS) - those health problems that remain after critical illness. Much as I hate the term ‘survivor’, I suppose that’s what I am. Until this group was created, the closest connection I had was an online group in the UK – getting up at 4am just to be able to talk to people who understand, because if you haven’t gone through it, it’s impossible to imagine.”
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