Miles Negus-Fancey is a former intensive care patient and he is one of the founding members of the ICUsteps Chester support group. Here he tells us how he became involved:

‘I was an intensive care patient in 2016. As we were discharged from hospital, the Countess of Chester Hospital (COCH)Therapies Department invited each of us back to a series of rehab gym classes. Scott, Sue and I left hospital around the same time and our respective partners all supported our ambitions to retrieve as much of our past lives. We all built up a rapport. My Outreach nurse, Carole mentioned her desire to start up a support group for relatives and ex-patients and asked if we would help her. Carole organised a car boot and cake sale which gave us our start up funding and enabled us to open our doors.

We were all discharged in August 2016 and by December we had opened a six weekly drop-in.

Chester group members at an exercise class

Chester group members at an exercise class

Very quickly we realised that we needed to up the profile of the group because there would be many short term members, who were people who only needed and wanted to visit the group once or twice. We formed a committee, decided about a Christmas dinner for the group and then we joined ICUsteps to become an affiliated group. Eventually we also agreed a hospital visiting scheme with Critical Care Outreach. We speak to patients and relatives who are either still in ICU or have dropped down to other wards. We also have volunteers from our support group who attend the rehabilitation gym class at COCH. Both of these things enable patients and relatives to familiarise themselves with members of the group, dissolving one barrier to attending a drop-in meeting.

The drop-in meeting will become monthly in January 2019 - this is on popular demand. Everyone liked the idea of meeting more frequently and monthly was easier to remember. Along the way we have solid support from members newly discharged and from others who have been out of ICU for decades, proving how essential ICUsteps meeting are to people’s well-being.

We invite speakers from local agencies like Dial West Cheshire to tell us about their services which are especially important with regards to Personal Independence Payment (PIP) and assisted living or just to know where there is a voice to listen.

We have a postal address and phone number – we have a really cheap deal that only costs £10 every three months.

We alerted all relevant local services to our presence and we have posters in wards etc. We also use social media for our group, using Facebook, Twitter and Instagram. We raise money through local fundraising, such as charity walks, wine tasting, dog show and grants from Chester Voluntary Action.

Three months ago we started gym rehab classes, because most of us required more than the allotted hospital classes – myself, Sue and Phil Dean volunteer to help these classes. We have a really motivated team and great support from within and without hospital. We are planning mindfulness classes and CBT sessions, along with other relaxation classes.

We have also been invited and have joined the critical care network for Merseyside & Cheshire, which covers 13 Trusts with ICU units. We meet every 3 months to discuss how best to support families and patients whilst in ICU.’