At the beginning of March we travelled to Birmingham to support Claudia, our SWAN UK Parent Rep for Hampshire, who was taking part in an event called ‘Talking Genomics With Patients’. The event was a public talk organised as part of Genomics Conversation Week by the Progress Educational Trust in partnership with Health Education England and its Genomics Education Programme.
Claudia was part of a panel alongside two other people whose lives have been affected by undiagnosed, genetic conditions. The panel were asked questions about their experiences of interacting with NHS staff and how they had found their encounters discussing their or their child’s undiagnosed genetic condition.
The panel discussed:
- Their positive and negative experiences with NHS staff
- How they felt when they first heard the phrase ‘genetic condition’
- Simple things staff could have done to make negative experiences more positive
- Tips of how staff could improve their communication with patients
As well as discussing their personal journeys the panel answered questions from the audience. Lots of the audience members were NHS staff who wanted to learn how they could improve the way they communicated with patients affected by genetic syndromes. The event was a great opportunity for NHS staff to find out more about how patients found their personal journeys with undiagnosed genetic syndromes.