ICUsteps: Support for ICU survivors to go Scotland-wide with Covid funding

The trauma of being placed in a hospital intensive care unit (ICU) will be hard to grasp for those who have never endured the experience.

ICU is a place that one-quarter of people never come back from. For those who make it, the road to recovery isn’t easy.

A study in January of this year found 59% of ICU survivors go on to suffer some form of mental health problem, including depression, anxiety, and PTSD.

Survivors can feel isolated, even among family and friends. They may feel like they’re going crazy, like there’s something still wrong with them.

Now a £200,000 grant from the Scottish Government will help one peer support network for survivors expand over the whole country.

ICUsteps, currently based out of Edinburgh and Dundee, has been forced on to Zoom by the pandemic, with face-to-face meetings on hold. However, the value of the support they’re offering hasn’t been diminished, and the digital world offers new opportunities.

ICU Steps has held meetings online since the pandemic hit

Olivia Fulton, who has severe asthma and has been in and out of ICU regularly for the last 18 years, has been using ICUsteps for three years and now sits on the committee.

Commenting on the £200,000 grant, she told The National: “It’s massive. Especially post-Covid where we’re going to have so many more ICU survivors who need this support, particularly as Covid is such an unknown disease.”

The support network aims to gain access to the ICU database shared across the 14 Scottish health boards. This and the funding will allow them to offer support to every single ICU survivor in the country.

That support is something Olivia – whose words appear at the start of this story – wishes she had access to through her first “haunting” experiences and “dreams” in ICU.

She goes on: “Of course people’s hallucinations and delirium are different, people’s experience is always going to be unique, but other people I’ve spoken to at ICUsteps have made me think, ‘Thank God I’m not the only one.’

“At least when I go into ICU with my asthma they know how to treat it, but you go into ICU with Covid and they’re still working out the best methods of treating you. That must be really unsettling, not quite knowing what’s going to happen.”

That unsettling feeling is something Paul Henderson knows well. After being hospitalised with coronavirus on March 24, Paul spent 35 days in a coma.

Paul (pictured below with two of his nurses) said: “I suffered from delirium, horrendous dreams which I thought were true.

Paul Henderson was in a coma for more than a month

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“I had to get psychiatric help to fathom out what was real and what wasn’t because I had some very violent and disturbing dreams.

"I dreamt my wife had shot her head off but was still alive, I could hear the screams. Someone cut my son’s fingers off and swirled them in a bowl. I could hear the digits going round. If I concentrate now I can still hear it.

“When I came out of the coma fully and was holding a conversation, the doctors were shaking their heads, asking how I was still there.”

The experience changed his life in more ways than one. An avid outdoorsman, Henderson has climbed more than 100 Munros. Now, he says, “just going uphill would kill me”.

He joined ICUsteps for his first session earlier this month, and said it had helped him realise he "wasn’t alone".

“Other people had experienced the dreams and depression. And it wasn’t just Covid.”

Henderson urges anyone coming out of ICU and feeling isolated not to “bottle it up”. He says: “Just make that one phone call. Try and pick up the phone. You’ll get lots from it, great support from it.

“You’ll be thinking you’re all alone, in your health and your mind, thinking no-one will have the same as me, but you’ll be surprised.”

George Guy, a cancer survivor and first lay member of the Scottish Intensive Care Society, is now the ICUsteps chair. That feeling of isolation is something he has seen and felt.

He explained: “One of the things you discover at the ICU meetings is, once you’ve been through the trauma of a stay in ICU, and bear in mind that one out of every four people that goes into ICU doesn’t come out alive, so if you’ve been in ICU that’s quite a lot of mental trauma, one of the things you feel the most is isolation.

“You come out feeling like you’re probably the only person in the world that feels like this, but these meetings let you see that you’re not. You learn very quickly that you’re not alone. That in itself is such a relief to so many people. To realise that what they’re feeling is natural.

“We offer empathy, not sympathy. That is such a big thing and it’s been so successful. We’ve had people turn up at our meetings with partners, and they’ve spoken about something and their partner’s looked at them and said: 'You never told me that'.

“[People] keep things to themselves. Whereas when they come to the meetings they feel they can talk.”

George explains how the groups will look to move towards a “blended” format in future. With those who can attend in person doing so, and others joining via Zoom.

This way, he says, no-one in Scotland will “fall through the cracks”.

ICUsteps would like to encourage anyone who is interested in their work to get in touch. You can do so on their website at tinyurl.com/ICUstepsScotland, or call them on 0131 242 6397.

However, that number will be changing as part of the government-funded expansion.