Loss of Sense – mapping the patient journey and its challenges
On Saturday 24th November Newcastle University researchers, Newcastle Hospitals ENT (Ear, Nose & Throat surgery) clinicians, Voice North and Fifth Sense combined together to host a patient and public information day. Fifth Sense is the leading UK charity for people affected by smell & taste disorders http://www.fifthsense.org.uk/. The information day was an informal forum to discuss how smell and taste problems may arise, share people’s experience of life with a smell or taste disorder, some of the potential support available, and launch 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.
Participants had the opportunity to share their experiences and feed into the design of the survey at this free event. The final research survey is currently being refined following feedback from the day and will shortly be released. The results of this national survey, the first of its kind, will be used to drive further research and funding for this group of patients who are often overlooked in our current health service provision.
The event was led by Stephen Ball, Specialist Registrar at Freeman Hospital & Fifth Sense volunteer Joanne Dixon and was attended by a group of approximately 30 people and included members from Fifth Sense, Voice North and local patients. We were also delighted that artists and sensory map makers Kate McLean & Rachel Hancock participated in the day. Kate and her colleague Rachel will be creating a visual interpretation of the data collected by the survey and provided some artistic exercises to collect graphical representations of how loss sense of smell or taste affects people’s lives.
Newcastle University hosted the event in the Hancock Museum and the university catering team kindly provided lunch and refreshments. The day was funded by the Faculty of Medical Sciences Tilly Hale Award: Celebrating Excellence in Public & Patient Engagement & Involvement (PPE/I), kindly providing funding £2,000 to pay for the event and its related artistic and research outputs.
To begin the day there were talks from Freeman ENT clinician & Newcastle University researcher Stephen Ball together with Fifth Sense founder & chair Duncan Boak to introduce the day and our collaborative research plans going forward from here. These were then followed by a powerful personal story from Joanne Dixon about her experience of life with a smell and taste disorder – and how it was transformed by a novel research treatment. Joanne’s talk prompted a lively group discussion that was scheduled for the largest session on the timetable, with questions and feedback from the Fifth Sense & ENT teams.
After lunch ENT Consultant & Newcastle University researcher Sean Carrie gave a presentation on the anatomy & physiology of smell and taste, what happens when it goes wrong, what your doctor should ask you, the challenges faced by clinicians and a review of the current treatments.
From all of our joint discussions with patients and the public it is clear there is an unmet need for more research, more understanding, more support for those that live with altered smell, taste and eating difficulties. We also understood that there are ways of coping that rarely get talked about. We also appreciated that just by gathering together around as a group of patients, clinicians and researchers and talking about it, there is a sense that you are not alone with these troubles. Life with altered smell and taste senses is not unique by any means, we need more events like this to share the experience and drive research forwards. We look forward to releasing the national survey that was co-designed as a part of this day to help drive this research forward.
Stephen Ball, NIHR Academic Clinical Lecturer in ENT Surgery
Newcastle University & Freeman Hospital
Comments from participant feedback forms:
"Enjoyable day - glad I came."
"Clear agenda, good balance across cases/people (experts/patients/artists). Participants with disorders describing their symptoms and what treatments they have tried."