Description

The creative idea is a game which can be played in a workshop or training session to enable players to engage with the lives of those with rare conditions and their experiences during the pandemic and their interactions with primary care.

Reflection

The game was inspired after analysing data from an online survey administered by Genetic Alliance UK during summer 2020 for those with rare, genetic or undiagnosed conditions or the people who care for them. The nearly 1,500 respondents supplied around 6,000 comments relating to their interactions with the healthcare system in the UK including many comments relating to primary care and Covid. There is an acknowledged lack of awareness about rare conditions amongst healthcare professionals. I created a game to be played during a workshop in order to present quotes from the respondents that was more interactive than simply reading them out or showing them on a power point slide. After playing the game, workshop attendees could discuss the themes which are arising from the comments and consider what could be done within primary care settings to address these. Initially, I had quotes labelled separately ‘Covid’ and ‘Rare’; I then realised that ‘Rare’ is the constant and the variables are actually ‘Covid’ and ‘Primary Care’. The quotes overlap like a Venn diagram to signify the intersectionality experienced by many with rare conditions; Covid added another layer to many people’s already complex lives.

To discuss further please contact Jennifer Jones: jennifer.jones@geneticalliance.org.uk