Though my own involvement started when I was invited to a meeting of ex-ICU patients, the story really started a little bit before then. That meeting was arranged by Mo, the Senior Sister at Milton Keynes Hospital who ran the ICU follow-up clinic. Meeting with ex-patients and relatives a few months after they’d left intensive care, she’d talk them through what happened during their illness, answer their questions and, if they wished, show them around the unit where they’d been treated. She noticed that they often expressed a desire to do something to help others like them as well as a wish to be able to meet other people who have been critically ill and could understand what they had been through. It was this observation and the support and encouragement of a colleague in the Patient Advice and Liaison department that led her to take it further.
She began by writing to ex-patients who had been treated in her unit in the previous six to 24 months. Patients and relatives who were long enough out of ICU to have found a way to cope with what they’d been through but still recent enough to know how hard it was and want to do something to make it less difficult for more recent patients. That was how the first meeting came together.
It took a few meetings before we decided on holding drop-in sessions as the best method of providing support, but those meetings served an important additional purpose. When we arrived at the first meeting, we were ex-patients coming to talk with professionals, to help them do something about a problem we understood. During those initial meetings, we began to bond as a group, share our own experiences and almost practice the support we’d be giving at a drop-in. We also bonded with the healthcare professionals in the group and became expert patients so by the time it came to arrange our first drop-in when we talked about ‘we’ it meant the support group - ex-patients, relatives and nurses together providing the support for ‘they’, the more recent patients and their relatives. This bonding of the group and the partnership between healthcare professionals and expert patients was a key step in the group’s development.
Having formed our core group and decided on how we would deliver support, there were a few key issues we needed to address to make it happen. We needed a venue, some funding to pay for it and a means to let people know the support was there.
Funding was actually quite straightforward, being a group of motivated individuals that weren’t constrained by the bureaucracy that could have been involved had the support group been a hospital service. The colleagues of one of our group donated the money they would otherwise have spent on Christmas cards and that donation of £120 started the ball rolling.
Our initial group meetings had taken place in the conference room in the ICU itself and although the possibility of a free venue on hospital grounds was a tempting option, we all felt that this should be avoided. Many patients, particularly those with symptoms of post-traumatic stress would avoid coming back to the hospital if they didn’t have to and we didn’t want to place any unnecessary obstacles in the way of getting people to attend. There was another benefit to choosing an off-hospital venue. Holding the drop-in away from the hospital helped to reinforce the feeling of partnership between the clinical and non-clinical group members - being on neutral ground rather than their home turf. We considered the options, taking transport links, ease of parking, accessibility and our funding into account and settled on the local YMCA as the place to start.
Having picked our venue and set dates for the first two drop-ins, we set about advertising the drop-in. To do this, we designed and produced a poster and printed out numerous copies, all on home computer to keep the costs to a minimum. We divided up the posters and took one to every Doctors’ surgery and pharmacy across Milton Keynes, adding an envelope to the bottom with business card size slips of paper with the dates and times for people to take away with them. We also registered the ICUsteps website and set up a page containing the same information as the poster.
Although we felt good about taking action to advertise our group, in reality I don’t think the posters were effective. Intensive care patients are a small part of the patient population and on top of that, there’s quite a small period of time that you’d need to catch people in for the drop-in to be of most benefit. The reality was that the best way of ‘recruiting’ patients for the drop-in was from the hospital, and in particular from the ICU. Mo told patients and relatives about the support group when they came to a follow-up clinic or even while they were still in the ward, and that was by far the most effective way of spreading the word. A poster in the relatives room would have been much more beneficial that all of the pharmacies put together, but we were finding our way. Even though our group was independent, the hospital’s involvement in telling people about the support helped establish the drop-in a being an obvious next-step after leaving hospital rather than something people would only consider attending when they were at their wits’ end. Having ICU staff at the drop-in also provided encouragement for people to attend as they’d be welcomed by a familiar face.
The date for our first drop-in arrived. With a supply of tea, coffee and biscuits in hand we went along ready for our first event. I must say it was just a little scary but we were all convinced of the need and we had to try.
The seating was arranged in small clusters which made for a nice informal layout rather than a big ring of chairs where everyone might feel pressured to speak. We’ve since had overseas visitors describe it as our ‘ICU cafe’ which captures the feel quite nicely.
We weren’t sure anyone would turn up but they did. When we came up with the drop-in model, we planned on holding the session for two hours and anticipated people stopping in for a short time and then moving on but the reality was quite different. People arrived at the start or soon after and would stay until it’s time to close. Looking back, we should have anticipated this. When they finally find a place where they can talk to people who understand them and what they’ve been through, they don’t want to leave. Originally we’d wondered if it might be difficult for people to talk about very personal and difficult issues but the reality couldn’t be more different. It’s always a good plan to start by talking about ourselves to put the visitors at their ease and before long they’ll pick up on details that they recognise from their own experience and this can make it easier for them to share their own story. More often than not however, the reality is that there’s no difficulty in getting conversations started and when people realise they’re among others like them, they’re only too happy to share their thoughts and experiences.
We might have been unsure when we started, but the drop-ins worked. Patients and relatives found it a great relief to be able to talk to other people about what they’d been through and be understood by people who’d been through similar experiences and we’ve been running drop-ins in Milton Keynes every six weeks since 2005. We’ve found that most people will come to drop-ins many times. The first is always the most difficult, not knowing what to expect, the second much easier and as the weeks pass and they get better themselves, they’re able to begin offering help and support to more recent patients joining the group. When people stop coming to drop-in, it can be a little sad to see them go but it’s not about trying to build a membership, it’s helping people back to a normal life again. Some people do stay on and help run the group and we’ll often have people come back on occasion just to catch up and see how everyone’s doing.
It seems a long time since that first drop-in back in 2005 but ever since we saw first hand the difference such a simple form of help can make to patient recovery, we’ve tried to spread the word and encourage others to do the same. Since 2010 when our first satellite group started things have really taken off. However, it hasn’t always been plain sailing and we’ve come to realise how fortunate we were that the Milton Keynes group seemed to work so naturally but the difficulties that others have encountered have allowed us to analyse approaches that worked and begin to develop a five step plan to establishing an ICU patient and relative support group.
Coming next: Part Three - The five step plan
Update on our mum in ICU 
Still feeling mentally lost after almost 2 yrs
Dad in ICU for past three weeks 
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Postcode lottery - Who here works in ICU? Is any feedback acted on?
