Wow, our fully-subscribed conference certainly lived up to its billing.
“It all started with an idea,” began master of ceremonies, Tom Laughton, referring to Duncan Boak’s decision to establish the charity, “yet here we are now.”
Tom was alluding to our environs at the impressive Conference Centre at Aston University, hosting Fifth Sense’s largest-ever gathering of close to a hundred guests. Tom was thinking too about the institutions that were present – organisations involved in active partnerships with Fifth Sense – and the talented people who were scheduled to speak. We had two Consultant ENT Surgeons who both run NHS Smell and Taste Clinics; we had the Director of one of the world’s leading chemosensory science research centres, the University of Florida Center for Smell and Taste (UFCST); we had the founder of TastEd, a wonderful charity making waves in food education for children; and the Director of Operations at our partners FlavorActiV, world-leaders in sensory management.
First up though were two extraordinary members, Abi Millard and Lucy Farrington-Smith. They set the scene with hugely moving personal accounts of their struggles with anosmia. It’s impossible to do justice to their talks – each gave us a full fifteen minutes. But those with smell or taste disorders deserve to hear more, so I’ll do my best.
Abi Millard – born without smell
Young Abi’s head was barely at lectern-height – she’s only fifteen. We heard how she and her parents struggled through Abi’s formative years, not just with the physical effects of congenital anosmia but with other, wider social impacts.
In infancy she was completely disinterested in food and mealtimes. Abi told us that “dinnertimes were a thing of nightmares. And I don’t mean in a-three-year-old-not-liking-broccoli-kind-of-way, I mean nine out of ten dinners being problematic.” Abi’s tantrums were so unlike her. And back then, her troubled parents were oblivious to the root of the problem.
Growing up with no sense of smell was alienating. “In primary school we would walk past the lunch hall while it was being cooked, and all my friends would know what was for dinner. They spoke about what they were going to have and how they couldn’t wait for lunch. I couldn’t include myself. I had lots of friends but at times like those I felt so alone.”
Yet it’s clear that Abi was developing an admirable sense of self. We liked her riposte when someone said, “you’re lucky you can’t smell, there’s cow muck everywhere.” Abi replied with, “that’s like telling a blind person they’re lucky because there’s an ugly painting.”
Sometimes though, it seems that society’s ignorance moves beyond mere insensitivity.
“A few years ago, in English, we had to write a short story based around the five senses. I asked if I could only include sight, hearing and touch. Once I explained why, the teacher penalised me and told me I was making it up. I was horrified.”
It’s particularly disappointing of course, when ignorance extends to the wider medical profession.
“Most doctors had never seen or heard of anyone unable to smell. They often told us they couldn’t do anything about smell. One even told me, ‘if there’s any sense to lose, you’d rather it be smell.’ It wasn’t uncommon that I came home crying from appointments, because I was just so confused.”
Lucy Farrington-Smith – the emotional impact of olfactory loss
Lucy lost her ability to smell in March last year after what she thought was just a heavy cold. She had always been appreciative of her sense of smell. When she realised it was gone, she had a mini-meltdown, inhaling every potent-smelling thing she could find – only to find nothing. In desperation she blew her nose repeatedly, causing bleedings that eventually had to be cauterised.
She went to her local doctor. She went to a private hospital. There were endoscopes, an MRI scan, but nothing visible could account for her smell loss. She’d been told that time might be the healer, but as the months passed, she became resigned.
She searched for anosmia on Instagram; “cos, that’s what you do when you’re twenty-something and confused.”
“I found there was no real social community. I made an Instagram account dedicated to that, a logbook, sort of a diary, to keep track of what was going on. Quickly I started to accumulate people, and they got in touch with me – adults with it, teenagers, mothers with daughters who are beside themselves and don’t know how to help them.”
“Accepting what had happened to me felt a lot like the grieving process; I was so frustrated, and angry, and fell into depression. I started writing as a way out of the darkness – just about what had happened to me, and it got quite wide media coverage on HuffPost, Stylist Magazine and an editorial in the Metro.”
Lucy heard about SmellTaste 2019 (a conference in which UFCST and Fifth Sense had collaborated) and, given that it was in Florida, tweeted to ask if it was being recorded.
“Duncan got back to me. I remember he and I spoke on the phone for about an hour when we first met, and it was incredible to finally speak to someone who just ‘got it’. There were no questions, no shocked reactions, nothing – just ‘yes, I understand – and here’s how it happened to me, too’. That was the first ‘taste’ of being understood.”
After Abi and Lucy had finished their talks, Tom asked us; “Can you relate to any of the things you’ve heard?” Cue a forest of hands.
Potential Diagnosis, Treatment and Current Research
We were privileged to have two such knowledgeable ENT Consultant Surgeons in Miss Lisha McClelland, who runs the Smell and Taste Clinic at Birmingham Queen Elizabeth Hospital and Fifth Sense trustee, Professor Carl Philpott, who runs the Smell and Taste Clinic at the James Paget University Hospital, Great Yarmouth. In terms that we could readily understand, Lisha explained how our senses of smell and taste work and how and when things can go wrong, while Carl talked about the latest treatment options.
Randomized control trials provide the necessary evidence for new treatments within the medical profession. But such trials require funding, and smell and taste disorders struggle to obtain their fair share. So the team behind the funded MACRO trial – which intends to clinically evidence the ‘best’ treatment programmes for Chronic Rhinosinusitis – should be applauded. Carl, a joint-leader on MACRO, gave us an update. Fifth Sense is a proud supporter of this project, the development of which was aided by members.
We subsequently heard – from Dr Steve Munger, Director at UFCST – that research in the US is funded differently. Steve shared some fascinating insights into studies which offered future hope for DNA-based and stem cell solutions.
Steve made an interesting point, noting that the US has nothing to compare with Fifth Sense. Institutions like Steve’s have little or no power when it comes to lobbying, whereas the independent, charitable status of Fifth Sense makes it a credible agent for change.
Several guests commented on the breadth, depth and variety of the talks. David Cherrie’s reaction was especially poignant; “I have had my condition for thirty-one years and I learnt more in seven hours than I have in those thirty-one years.”
Questions, Lunch and Learning to Taste
The Q&A sessions were notable for illuminating responses from our experts. When asked about depression, Lisha explained how ‘happy hormones’ are released when we eat. Because people do so at regular times in the day, they enjoy a constant drip, drip of well-being. She offered a great tip; if food no longer does it for you, best to look for and substitute other pleasing activities.
And then we went for lunch…..
Having tucked in to the special, multi-sensory menu we soon learned that the right food does still do it for many of us. At the start of the afternoon session, Tom asked if we got more than our expectations from the meal. Another forest of hands. “It was like someone had read my mind,” said one.
It was clear that the luncheon environment – a shared experience with other members and many partners too – had contributed to this enjoyment. The theme was continued when Dale Smith, from FlavorActiV, hosted a tasting session. One by one, we sipped from cups of water containing a series of flavour compounds common to many foods and drinks. What an eye opener! Yes, most of us did indeed pick out various bitternesses, sweetnesses and other sensations. While we didn’t always get the same sensations (Lisha compared our multifarious smell pathways to a piano with missing keys) finding something and comparing it with others was an exhilarating experience.
We were a mixed bunch of course, from every age group and all walks of life. Yet the burden we shared had served to unite us; “I’ve never felt so comfortable with people whom I’ve never met before,” said Hamid Rahmatinia.
TastEd – sensory food education for children
Bee Wilson’s talk was a different kind of eye-opener. The founder of TastEd shared her charity’s vision for meaningful food education among the nation’s children. The TastEd programme focuses on basics like fruit and vegetables. Bee described the lightbulb moment when a child of twelve told her that he’d never handled or tasted a fresh tomato!
The multi-sensory nature of Bee’s work – transcending smell and taste – was a commonality that first brought TastEd and Fifth Sense together.
Bee played videos showing her programme at work in schools. We were struck by the degree to which young children were super-engaged in fun, tactile games, laughing excitedly as tiny hands felt for the identities of fruits and vegetables hidden in socks. Bee asserted an irony; that Fifth Sense members were mindfully re-connecting with food values just as the general population are becoming increasingly disconnected. She’s right isn’t she? Much of what we buy these days is wrapped in plastic or hidden behind ‘Buy Me’ packaging. The pace of change too, is frightening. When Bee first started her project, she asked the children, “Where does food come from?” More often than not, the answer was “Tesco.” It seems that today though, the answer is more likely; “Mummy’s iPad.”
Fifth Sense Funding Success
Then it was Duncan’s turn to talk about the most exciting development of the year, namely Fifth Sense’s successful bid to the National Lottery Community Fund. Many months of hard work and a comprehensive sixty-page document were required to secure the sum of £238,815. Duncan was keen to point out though that it was a collective effort. First, none of it would have been possible without the team of Fifth Sense volunteers. Further, whether directly or indirectly, beneficiaries and members had played their part too. If you have ever contacted Fifth Sense for advice, information, met us at one of our events or participated in our surveys, your input has helped shape the charity’s output – and in turn informed the very plans we submitted to the National Lottery.
Duncan explained that – while it may seem like a significant sum of money – the funds have already been allocated against a fully costed, three-year Development Plan approved by the Lottery. You can read more here.
Whatever we do, Fifth Sense is always keen on feedback. Our thanks then to the large number of guests who completed evaluation forms. We’re delighted to report that over ninety percent of you gave the event a four or five-star rating. Just as important, your comments will prove invaluable when planning future meetings and events, something we’re keen to do more of, enabled by the Lottery funding.
We’ve left the last word to Duncan. What stood out for him? What were the memories that would stay with him?
“Looking around the room reinforced my belief in what can be achieved by people coming together. I’m immensely proud to have created an organisation that has community at the heart of everything we do. I’m referring to the volunteers who, faced with their own smell and taste challenges, are turning their experiences into positive action on behalf of others. I’m talking about our members too, many of whom travelled large distances to confront their conditions, share their stories and support each other. And our partner organisations, willing to give of their time, their resources, or their money to search for treatments or solutions to the challenges we face.
“My thanks to everyone for making the conference so successful. I’m very much looking forward to working with all of you in what promises to be a very exciting 2020.”
A huge thanks to our speakers: Tom Laughton, Abi Millard, Lucy Farrington-Smith, Prof Carl Philpott, Miss Lisha McClelland, Bee Wilson, Dr Steven Munger, Dale Smith, Duncan Boak
Thanks also to Aston University Conference Centre and their fantastic catering team for helping make the event such a great occasion