Sharing experiences of navigating the healthcare system with a smell or taste disorder
On Saturday 24th November Fifth Sense members came together with clinicians from Newcastle Hospitals/Newcastle University, olfactory mapmaker Kate Mclean, her colleague Rachel Hancock and Voice North members at the Great North Museum in Newcastle to discuss the challenges that many patients with smell and taste disorders face in getting medical advice and treatment.
The day was an informal forum to provide feedback on a survey that will be sent out to all Fifth Sense members to gather data on this topic. The event started with a presentation from Steve Ball, Newcastle University, and Duncan Boak, Fifth Sense Founder and Chair, who gave an overview of the day and explained the structure of the survey objectives. This was followed by Duncan and Fifth Sense volunteer Joanne Dixon who spoke about their own personal experiences and the challenges they had faced getting information, diagnosis and treatment from doctors.
Audience members then broke into groups to talk about their own experiences and make some much-valued suggestions around design of the survey.
Following lunch Sean Carrie, ENT Consultant at the Freeman, spoke on smell and taste disorders from the view of medical professionals. He talked about the most common causes, including sinus problems such as polyps and chronic rhinosinusitis, viral infections and head injuries whilst drawing on the challenges also faced by clinicians.
Steve and Duncan then ran through the questions on the survey which generated some fantastic discussion and gave the team a number of ideas and ways in which to drive the design of the survey forward. This will ultimately result in a valuable piece of research that we can use as part of our ongoing efforts to highlight the need for improved medical services for people affected by smell and taste disorders.
We were very privileged to welcome sensory map maker Kate McLean and her colleague Rachel Hancock who created a visual interpretation of the event. Towards the end of the day Kate and Rachel presented audience members with a blank smell wheel and handed out paint pots and coloured pencils. Everyone happily joined in and created their own interpretation of their smell today and how they would like their smell to be in the future.
A great deal of useful feedback was provided by audience members at the event and this will be incorporated into the survey which we hope to share with Fifth Sense members via email in early 2019. The artistic work and visual representations provided by Kate and Rachel were very powerful. As Steve said “It is certainly much more impactful than numbers and text alone.”
We’d like to say a huge thank you to all the Fifth Sense and Voice North members who participated in the event, Kate and Rachel for their fantastic contributions, Steve Ball, Sean Carrie and also to the Great North Museum for hosting us.