World Taste and Smell Day 2022: Transforming understanding of smell and taste disorders
For World Smell and Taste Day 2022 I want to share a message on how important advocacy is at Fifth Sense, and how actively involving and empowering the people we represent continues to be so vital to the work of our charity.
Fifth Sense’s vision is to transform society’s understanding of the importance of smell and taste, and through doing so, transform the lives of those affected by smell and taste disorders. Our work over the years has demonstrated that if people have a better understanding if the ways in which smell and taste influence and impact our lives, then in turn they can better understand the impact that smell and taste impairment can have. This ‘transformation in understanding’ can be very powerful indeed when it is led by those of us with the lived experience of a smell or taste disorder.
It is vital for those of us with this lived experience to be able to speak up and advocate for ourselves, and in turn, educate others. We can all be advocates, but we often lack the confidence, knowledge and support to do so. This is one way in which Fifth Sense plays an important role.
I know this from my own experience. For over six years after I lost my sense of smell I didn’t engage with it. This was due, in no small part, to being told by my doctor that little was known about smell loss and nothing could be done. I listened and I didn’t question this. My doctor knew more than I did, right?
It wasn’t until I read about someone else’s experience (Molly Birnbaum’s excellent book Season to Taste: How I lost my sense of smell and found my way) that I learned I wasn’t as completely alone, as I’d thought, and that there were doctors who knew about smell disorders. Reading Molly’s book prompted me to take action: I wrote to one of the experts I had read about, Prof Thomas Hummel. In turn, Thomas introduced me to Consultant ENT Surgeon Prof Carl Philpott, who had established the UK’s first NHS smell and taste clinic.
Through the conversations I subsequently had with Carl I learned that there were lots of other people who, like me, had been given no information or support, and there was nothing out there to help them. I decided to use my experience to positive effect and create the organisation that I wished in hindsight had been there to support me when I first lost my sense of smell. But more than that; I wanted to create an organisation that would give others the opportunity to use their experiences to help change the way smell and taste disorders are recognised, treated and researched. We launched Fifth Sense in 2012.
Fifth Sense puts the people we represent at the heart of everything we do. This is one of the things I am most proud of about our charity: our focus on people, and how we support, encourage and empower those affected by smell and taste disorders to become champions of their own condition and play their part in our efforts to increase recognition, improve services and drive vital research.
And we involve everyone. The reason why we’re the charity for people affected by smell and taste disorders is because we seek to include and support those with the lived experience and also partners, parents, other family members, friends, as well as clinicians, researchers and others with a passion for smell and taste.
I’d like to take the opportunity to highlight just a few of the people who are actively involved in Fifth Sense’s work.
There’s Chessie, who sought support from Fifth Sense in 2017 just as she was beginning to come to terms with a diagnosis of congenital anosmia. Fast forward to 2022, and as a Fifth Sense Ambassador Chessie has played a vital role in our Priority Setting Partnership and the Smell and Taste Disorders Symposium we held with the University of East Anglia, talking about the impact that congenital anosmia has on young people and their parents.
Tom lost his sense of smell after an unprovoked assault when he was 19 but it wasn’t until 2013 when he was able to share what this loss meant to him as a speaker at the very first Fifth Sense conference. Since then Tom has become a passionate advocate for Fifth Sense, now well-known within our community for leading our virtual #LetsTalkSmellAndTaste sessions.
Tracey has recently joined Fifth Sense as a volunteer. Whilst she doesn’t have a problem with her sense of smell or taste, she is getting involved in support of a family member. Tracey wants to work with us to provide support to others and help increase recognition of the significant impact that smell and taste impairment can have on people.
Sadly I can’t include everyone’s stories here, but I would like to take the opportunity to say a huge thank you to all of our volunteers, ambassadors and champions for the important work that you do on behalf of Fifth Sense and our cause. Head over to our website to find out more about our team.
This is how Fifth Sense works. We actively involve the people we represent in our work and empower them to help us in our ongoing efforts to make these invisible disabilities visible.
And we need to, because there is still a huge lack of recognition and knowledge about smell and taste disorders across health and social care. Whilst the Covid-19 pandemic has highlighted smell and taste impairment like never before, it has also highlighted the lack of recognition and knowledge amongst healthcare professionals, lack of specialist services and lack of research into new treatments.
It’s through working together and enabling our voices to be heard that we can change things, and we’re continuing to grow and develop with the involvement of the people we represent. One of Fifth Sense’s most important initiatives, our Smell and Taste Disorders Priority Setting Partnership, was led by a steering group made up of Fifth Sense members and clinicians, and delivered a set of research priorities that are informing the direction of the Fifth Sense Research Hub, launched in May this year.
There’s much more to do, and much more to come, and there are lots of ways that people can get involved in our work. Whether it’s providing support to others, raising awareness in your own community, or raising funds to support vital research, there are ways in which everyone can get involved. We’d love to hear from you. Please contact us as firstname.lastname@example.org if you’d like to help, and if you’d like to make a donation to help fund our support services, educational work and research you can do so here.
Thanks to all of our volunteers, ambassadors and champions for everything you do.
Frauke, Dia, Katie, Sharika, Yazz, Alison, Charlie, Carl, Chessie, Aisha, Josie, Rebecca, Louise, Sarah, Debs, Tom, Ruth, Max, Julie, Joanne, Tracey, Trevor, Jan, Alison, Bayo, Lucy, Ed, Kathy, Elaine, Luke, Adam, Janet, Tracy
All the best,
Chief Executive and founder