For those of us who’ve been through a period of critical illness and are fortunate enough to come out the other side, we leave hospital in a weakened state and emerge back into a world that looks very different to how it did before.
It may not be true for everyone, but for most of us intensive care is something we’ve never experienced before and the sudden transition from being a normal person to being an ICU patient and the world your plunged into isn’t something people understand. I’ve heard it described as being like an alien abduction. Suddenly transported into a bizarre environment which bares little in common with the real world we know and much of what we see is through the haze of medication, stages of sedation and not to forget life threatening illness or injury.
When we do leave the hospital, many patients find that critical illness changes how they think about things and how they assess the things that matter in life. Many want to do something to repay the debt of gratitude they feel towards the people whose skill and dedication ensured our survival. Many more just want to talk to someone who understands what they’ve been through and what they feel.
As a group, ICU patients are a fairly small community but unlike people with other specific illnesses or conditions who are treated in specialist wards, for intensive care patients as soon as we’re no longer classified as being ‘critically ill’ we can be sent from the ICU to any number of places in the hospital. We may still be emerging from the medication used to treat us in ICU when we get to a general ward and when we finally have a clear enough mind to question what happened, we find no one around us who can understand or support us.
Despite the very different reasons for admission to intensive care, there are many common issues that can be faced by patients as a result of the severity of their illness, the medication needed to treat it and even the ICU environment. Although patient information is improving and can help prepare us for what we might face in our recovery (see icusteps.org/guide for more information), it’s quite common that the treatment needed to save our lives will leave us with physical, psychological and cognitive issues to deal with that we wouldn’t have expected.
So when we leave hospital, possibly with minimal or even no planned support ahead of us, we find ourselves back at home trying to put all the pieces together, to understand what happened, to understand why we feel the way we do but with no one who can help. Even if we reach out to our GP, it’s unlikely they’ll be aware of the specific issues that are common to patients who’ve been critically ill.
I was fortunate enough to have been treated in a hospital with and ICU follow-up clinic, this is the position I was in. When I received a letter from the nurse who ran the clinic inviting ex-patients to a meeting to see if there was something we could do to help other people going through similar experiences, I jumped at the chance. I wasn’t alone. It took a few meetings for our group to develop a core of interested ex-patients and relatives and decide on a direction to help others and how we, in partnership with healthcare professionals could make things better for those like us. We tried to see if there were other groups like us that we could learn or get advice from but there weren’t any and so ICUsteps was formed.
With two intensive care nurses and a dozen ex-patients and relatives we set about the process of deciding how we might be able to give others that support which we would have so dearly loved. Those initial meetings allowed the core group that was forming to bond and to benefit first hand from being able to talk and share experiences with each other. It became clear that simply providing a forum for more recent patients to come together, meet others like them and talk to patients who were further on in their recovery would be the best way to provide our support and so we settled on the idea of drop-in sessions. With that having been decided, the next thing we had to do was arrange it, see who came and whether they would find it of benefit.
Coming next: Part Two - Arranging and running a drop-in