Post diagnosis was a key theme that occurred at every stage of the process, many participants citing they had felt completely lost after every stage.
The distinction that was made about this period was about not knowing what to do next, feeling isolated and some of the everyday life tasks that people felt they were unable to do. It was often said that there was enough medical support material and resources at point of diagnosal (in the doctors surgery, at the hospital) but often the kind of support that was needed at this stage was another person, someone who could tell you what it’s like to live with the condition and help you with all the ‘small’ things that make life easier.
When we met Helen during the initial research stage, she’d been diagnosed with an acquired brain injury and left to stand on her own two feet after being in hospital for over four months. When she got home she was living on takeaways and leading a poor quality of life. She said,
“I don’t just want to exist, I want a life of quality”
Ideas that spurred out of this theme, post diagnosis, were generated throughout the process. It could be said First things first is the direct outcome of it, but there were other ideas from the workshops in Glasgow, Edinburgh and Perth that cropped up similar to F2F.
In Glasgow we came across the idea from John, who had suffered a stroke and when leaving hospital had returned to find bills and debt collectors at his door. Unable to pay them whilst in bed, he felt lost, alone and helpless because he couldn’t cope with the everyday things. He generated an idea that involved a helper taking care of household tasks for you whilst you were in hospital, and who would meet you when you left to talk you through life with a long term condition.
Some of these ideas picked up interest and developed further into my perfect friend and xxx. These were about befriending and linking people up, more on these here.
Many of the final ideas talked about this stage, post diagnosis and about reaching out to people who had just been diagnosed. Some of the ideas generated from reach looked at getting information and support to people in this situation, again it being mentioned that this stage is crucial.
