Self management: It’s all about good conversations

The following post first appeared on the ALLIANCE Self Management Network Scotland Blog.

By Amy Solon, National Self Management Coordinator at Waverley Care.

In October 2014, we welcomed three very lovely visitors to shadow our self management workshops ran in Edinburgh for a group of gay men living with HIV. Two of our visitors were from Izmir, Turkey where they are linked to an HIV clinic there. Our third visitor was Ben Collins, founder of International HIV partnerships; a not for profit organisation that develops partnerships with key stakeholders in predominantly low prevalance HIV countries across Central and South East Europe and the Middle East.

Ben had approached Waverley Care two years ago having heard about our self management work and was interested to see how the project could be replicated on international soil….Izmir in this instance. After initial discussions, through his work with an HIV clinic based in Izmir – EGEHAUM – Ben identified two self management ‘champions’ who would develop and sustain the project with our support. ‘The boys’ as they have been christened (!) are two men living with HIV who were keen to tackle stigma and to promote awareness around living well with HIV through effective self management.

After ‘the boys’ participated in and shadowed our life coaching workshops in Edinburgh (and of course had the opportunity to sample some of our fine local delicacies including haggis which went down a particular treat!), Waverley Care’s two national self management workers – ‘the girls’ – went to Izmir to work with ‘the boys’ , Ben and staff at EGEHAUM.

This stage of the project was essentially a scoping exercise; we are passionate about self management and we understand the impact that it can have on people’s lives. Our best hopes were that what we do could be adapted in some way to suit EGEHAUM needs and Turkish culture.

In assocation with Ben, ‘the boys’ and EGEHAUM, we hosted a conversation café (Izmir’s first!) which was attended by 38 people most of whom were patients.  What was shared amongst the groups clarified to us that many of the issues were the same; feelings of stigma and prejudice, low self worth, managing pill burden. This gave us the confirmation we needed that there is absolutely a place for self management (and we look forward to going back in May where we are going to support ‘the boys’ to deliver their very own self management workshop).

What we hadn’t anticipated however were the unexpected outcomes that resulted from the café. For the patients that attended, the majority of them had never spoken to another HIV postive person about their status. The energy, enthusiasm and desire to take control along with accessing informal peer support (for many) for the first time ever, instigated the development of a Whatsapp group; one of the participants took the initiative to arrange a group for all interested people to meet up and come together to share experiences and offer support. Their first meeting took place immediately after the café and 8 of the participants went for a coffee. In the time that has since passed, the group has continued to meet and plans are in place for future events and meetups.

The photo below taken on the day, sums up our Izmir experiences; irrespective of challenges and obstacles, talking…just talking can be the first step in facilitating self management.