On Saturday 30th September 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 overview treatments and current research.
The event was attended by a group of just over 30 people and included members from Fifth Sense – some of whom had travelled for hours on the train from the south of England, Voice North members the altered eating team (Duika Burgess Watson, Chef Sam Storey, Mia Campbell & Val Bryant). Newcastle University hosted the event in the Baddiley-Clark building and the university catering team kindly made there excellent kitchen facilities available to Chefs Sam & Mia.
To begin the day there were talks from Freeman ENT clinicians Stephen Ball & Sean Carrie to introduce the anatomy & physiology of smell and taste, what happens when it goes wrong, what your doctor should ask you and a review of the current treatments and research. 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 with questions and feedback from the Fifth Sense & ENT teams.
An excellent lunch menu followed prepared by Sam & Mia from dishes inspired by Asian menus with a focus on textures and spices aimed to combat the lack of enjoyment or pleasure in eating with a smell or taste disorder. Sam (pictured below) & Mia served fresh summer rolls – cool, herby, crunchy, fresh and zesty; texturally interesting with citrus & chilli dip, stewed pork & red pepper curry and purple sweet potato & squash red curry – both creamy, sour and sweet with umami spice and herbs. Desert followed with crunchy black sesame snaps, pineapple, red bean paste and glutinous rice. As well as being a fantastic meal it allowed participants time to sit and share experiences over lunch.
The afternoon consisted of Duika introducing the altered eating and resources for living project (https://www.dur.ac.uk/public.health/projects/current/r4l/) and possible strategies, with another powerful personal account from Val Bryant about her story of surviving head & neck cancer and its impact on altered eating.
Overall, we came to understand more about the social and emotional consequences and challenges of living with altered smell, taste & eating issues and some of the current treatments and research. Yet 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 food and talking about it, there is a sense that you are not alone with these troubles. Altered eating is not unique by any means, we need more events like this to share the experience…
“Huge thanks to everyone for sparing their personal time to make this happen.”
“Thank you for holding this workshop/info day - it was extremely interesting.”
“Many thanks to you for organizing it!”
“Having the programme on a Saturday made it particularly accessible.”
“Audience participation was good - sharing experiences things that work for them.”
“So good to know I am not alone.”
“The information from the medical experts. Hearing of other experiences. The food texture experiment lunch.”
“Sharing is so helpful - don't feel so alone - must try new foods - never had curry in my life until today - great! Never had fresh pineapple. Wish we could have local Ncl quarterly meetings - Maggie's Centre at Freeman ?”
“Anatomy and physiology was excellent. Very well explained with useful information.”
“Personal stories - Val was great to listen to and Duncan. Lunch. All the rest of it too!”
“Loved all of today getting to speak to everyone and hear information and share experiences.”
“Advantages of patient involvement. How to best develop patient involvement.”
“I loved the interaction with the chef and the input from Val - thank you.”
“Depression/anxiety when living alone, afraid to go out with friends for fear of eating something that suddenly causes a serious chemical taste/smell and I have to leave. The taste e.g. dressings with vinegar - lemon juice. Loss of joy of smelling cut grass, sea, flowers, personal contact. Life is so bland - feel alien.”
“Psychological aspect. Living with a total loss of smell with no chance of recovery. No association with my surroundings or people. Feeling of living in a "dead world" and isolated with little or no help from medical personnel.”
“I'm more sensitive to sweetness. Loved it - thank you it was very informative never would have thought about the food textures only because I have no prior experience of smell.”