Setting up a support group: Part One - Why?

[ICUsteps-Peter]

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

icusteps.healthunlocked.com...

[karen1234]

Hi Peter

I can really identify with your blog.

I am grateful that I was able to access support, without which I don't know where I would be today.

The hospital network post ICU was woefully inadequate and whilst there were support groups available, they were referral based and you had to be randomly referred through a research project. I wasn't selected.

Thankfully I was able to receive help through GP referral and received CBT which was helpful for what was described as PTSD.

I am interested to read your next instalment .

Karen

[ICUsteps-Peter Partner ICUsteps in reply to karen1234]

Hi Karen,

I will hope to touch on this in the future posts, but there are important aspects of our critical illness legacy which will be unique to us, but there are many more which are actually quite common for those who've been through a critical illness. By helping address these common issues through patient information and support at local groups, it makes the remaining issues seem less daunting. Too much of the help that people get seems to be down to good fortune and persistence rather than a planned pathway. It is getting better, but it's still far from being standard. With the growing interest and acknowledgement that critical illness doesn't end of discharge from hospital, much less from the ICU itself, we can but try to build the momentum until it does become the norm.

I'm glad at least that you got the referral you needed eventually, though it would be better if we didn't have to fight for the care we need when we're in such a vulnerable state.

[Luckyone]

Hi Peter,

Thanks to you and ICUsteps people are starting to realize that there is a need for support of former ICU patients, I was lucky that my niece who is an ICU nurse in the hospital I was in saw both sides, being both a healthcare professional and a relative and realizing how difficult life can be for the patient and relative, also knowing but unable to tell anyone that my chances of survival were slim.

With help from my niece, another nurse, my wife and myself we started our own support group in early 2012 with drop-in meetings at a local pub, we had 6 people at our first meeting, at our last meeting we had 14, my wife and myself were also invited to a talk for ICU staff, I'm glad to say it went very well, many of them unaware of the after effects of a stay in ICU.

We were very pleased to meet you and the trustees of ICUsteps late last year and to become ICUsteps Hastings, the help and support you have given us will I'm sure help our local group grow and offer more support to those that need it.

A big thank you.

[ICUsteps-Peter Partner ICUsteps in reply to Luckyone]

Hi Luckyone,

Without wanting to give too much away about the next chapters, I think what you've achieved with getting your group set up will illustrate perfectly some of the key points to follow. As we recover and are able to do more, many of us want to do just that. The healthcare professionals do an amazing job and we know we can never repay the debt we owe them. We do however have something that even they don't - the patient viewpoint of critical illness and that's where we can help provide a service to help those like us and take some of the strain, letting the healthcare professionals concentrate on what they're best at.

The easier we're able to make it to set up and run groups and establish a network of skilled, motivated ex-patients to spread the load and provide a louder voice for ICU patients, the better.

[helsy]

Brilliant blog Peter...but I want to know how to set up a group where I live, as the suppport for me 5 years ago was none existent. Can you point me in the right direction???

[ICUsteps-Peter Partner ICUsteps in reply to helsy]

Hi Helsy,

Thanks for the feedback. There will be further posts in this series, firstly covering how our initial drop-in went and then onto some of the practicalities about what's needed to get a group up and running and to be sustainable. I aim to add the next instalment every 7 to 10 days, other priorities permitting but I hope to make it a useful reference point and a basis for the more detailed information we give to healthcare professionals who are keen to help set up a local support group.

[barbs58]

I'm interested in setting up a local support/information group too, although I suppose I'm more interested in the talking to staff/other professionals, as Luckyone has just done in Hastings rather than the support group, self-help side, but happy to help with both. I'm in Leicester. I really would like to do this with someone else, so if anyone professional or patient is interested, please let me know. I'm quite confident to go and talk to meetings, I just don't want to do it all on my own, and a professional contact would be great.