Helle Sorensen, Communications Officer, Intensive Care Society
in conversation with
Gordon Sturmey, Founder of ICU Support Network in Reading and former ICU patient
Former ICU patient shares his experience with trauma. Some months after his discharge from hospital Gordon still had only a limited recollection of what had happened during his stay 30 day-stay in intensive care: “I could only recollect about 8 to 10 days of my stay in the Unit”.
Editor’s note: Recovery journeys can be difficult, but they are individual, and one person’s experience does not predict everyone’s. Gordon Sturmey spent one month in intensive care at the at the Royal Berkshire Hospital 10 years ago. He started the ICU Support Network – Reading, celebrating its 4 year anniversary this September 2016. Here he offers advice on how former patients can tackle the many ambiguities of trauma after critical illness.
Missing puzzle pieces
After discharge to the ward Gordon was visited every week by the Follow-up team and invited back within 2-3 months following hospital discharge: “People would say things, and I just wouldn’t understand. Then slowly, you start to piece the puzzle back together. And you realise what you’ve put your relatives through. That’s when the trauma starts”.
I have asked Gordon to talk about ‘stress’ among former ICU patients, and he begins by kindly correcting me: “Patients deal with trauma, not stress. Stress goes away. Trauma stays with you”. But, Gordon reassures me, there are ways to deal with it (we shall return to that later).
The first thing a former ICU patient must do though is to understand what trauma is and that he or she is not alone in experiencing it. Gordon offers me a slide from one of the presentations he gives to intensive care professionals. The title ‘Effects from prolonged stay in the ICU’ is under a blue, wavy banner.
There are only 7 points on the slide, but they should not be underestimated. Gordon tells me that to this day, 10 years after his illness, he still feels the weight of the points on that list.
No one wants to talk about it
One of the first emotions survivors encounter is guilt. They feel guilty when they wake up, see their family’s faces and realise what they’ve put them through. Many patients will try to be brave after discharge and to hide their emotions: “I tried to hide my feelings”, Gordon tells me. “I felt that I had already put them through a lot, and I didn’t want them to see that I was adversely affected by my experience so I hid it but some things still affect me today”.
Gordon offers another reason as to why patients can struggle to talk about their illness after discharge: “My wife didn’t want to speak about. ‘That’s it’, she said, ‘we’ve been through it, and we need to forget about it’. She had been there, day and night, for my entire stay in the unit, and I guess she just wanted to stop thinking about it”. Gordon thinks it’s often more difficult for the relatives, because they see their loved ones in a position where they could die.
Expensive dinners and odd demands
The guilt also manifests itself in an absurd need to thank staff and family members. When he was discharged, Gordon took his family to a nice Italian restaurant for dinner (“it cost me a fortune!”), because he felt he had to give them something in return, and to say thank you. And it’s the same need that drives him to offer speeches and helping other patients get over the impact of critical illness.
On the other hand, generosity can quickly be replaced by odd demands. For instance, after a four month stay in hospital he felt institutionalised and – after two days back home – asked his wife why she wasn’t changing the bed linen every day.
Emotion over Andy Murray
Generally speaking, Gordon explains, it can be very, very difficult to control your emotions – and they come in many different forms: “It doesn’t have to be related to the intensive care stay. I felt an inexplicable surge of happiness in 2013, when Andy Murray won at Wimbledon. I became very emotional.”
Gordon often goes ‘oh, who cares’ when someone tells him about a rather trivial problem but can get very angry for no reason: “The other day at a petrol station, someone parked in front me. I knew it was only going to be half a minute, but I still gave him my two penneth. Believe me, I wasn’t that emotional before my illness”.
No statutory limitations to an ICU stay
There is a lot of anxiety and insecurity about the future. When he finally went home, Gordon received rehabilitation support. The day after discharge from Intensive Care when the physio’s assessed this fitness he was able to walk a few steps without his slippers, but once they were on he was unable to move “Suddenly, I couldn’t walk! I couldn’t even get my legs back into the bed. The slippers were just too heavy. Of course you fear you’ll never get better when things like that happen, again it is another incident that contributes to the trauma that you are beginning to suffer”.
You will get better, bit by bit, Gordon says, but you may never completely get back to the person you were before: “I always say that there is no statute of limitations on the experience of a stay in Intensive Care”.
And here’s where he offers his advice on how to learn to live with the experience and keep the trauma away: “It helps to give back. Still to this day it helps me to talk about my illness”.
Finding empathy, rather than sympathy
Gordon’s great passion is the Support Network in Reading. He explains that although it is crucial to talk to your friends and family, a support network with other patients can give something very important: “The thing is, your friends and family will show sympathy, but they may not be able to show empathy. A support group can do that”.
The Support Network sessions in Reading usually consists of two presentations with a tea break in between. The tea break can be the most important part of the evening, being the first opportunity for many patients to talk, to really talk, with people who have been through the same thing.
That’s when Gordon and I are interrupted. His meeting with the Intensive Care Society’s Patients and Relatives Committee starts. Gordon has some more talking to do – to help himself and others to tackle trauma after intensive care.
About Reading Support Network: The main driver behind setting up the support group was the experience of a former ICU patient, Barry Vincent. He found that when he heard Gordon Sturmey share his story he was able to come to terms with his own experience. Sadly, Barry has died, but Gordon and Lead Nurse Melanie Gager are committed to the vision of an ICU support network. Reading Support Network emphasises having intensive care professionals present at all their meeting; without their support the meetings would not happen. The group meets 4 times annually, typically with participation from around 30-40 patients and relatives.
- Do you need someone to talk to? Here is advice on where you can find support.
- Read Gordon Sturmey’s stay in intensive care here.
- Sarah Wake and Deborah Kitchiner (2013): Post-traumatic stress disorder after intensive care BMJ website http://www.bmj.com/content/346/bmj.f3232.long
- Diaries could be a useful tool for PTSD among ICU survivors: http://www.hopkinsmedicine.org/news/media/releases/ptsd_common_in_icu_survivors