In 2005, Duncan Boak was living and working as a musician in Leeds, a talented 22-year-old guitarist hellbent on developing a career in the music industry and involved in a range of exciting projects.
After a long day in a recording studio and needing to unwind, Duncan joined a group of friends on a night out. As he climbed the steep stairs into a bar, he tripped and fell backwards, hitting his head hard at the bottom.
Duncan was admitted to hospital and remained unconscious for 24-hours, with scans showing bruising to his brain. Despite the severity of his injury, however, he was discharged after a just week.
“I was sent home with a box of paracetamol, a box of codeine and very little else,” said Duncan. “I’m the sort of person who likes to deal with whatever the situation is and don’t like to rely on other people for help, but I didn’t get anything in the way of support.
"I stayed with my parents for a fortnight to recuperate, I was very tired and wasn’t eating very much. Then I went back to Leeds and tried to carry on as if it was business as usual.
I wanted to put it behind me and initially everything seemed to be alright, apart from the fact that I couldn’t smell.
As the weeks went by Duncan became concerned that there had been serious damage to his brain, however with many changes occurring in his life he did not initially give much thought to the loss of his sense of smell as a result of the injury.
He said: “I started to become quite depressed. I was still playing my guitar and writing music, but I wasn’t eating much and became very thin. I started to have a difficult time with my girlfriend, and she ended our relationship a couple of months after the accident.
“I went to the doctor but was told there’s nothing much that can be done about my sense of smell and if it hadn’t returned within a year, I would have to learn to live with it.
“So, a year on I thought ‘nothing has changed, I can’t do anything about it, and nobody has heard of this’. I thought I’ve just got to disengage with it and get on with my life. I did that for the next six years.
“I was aware that my life and the way I felt about things had changed, and my ability to form the sorts of relationships that I had before the accident had been affected. I didn’t seem to have the same depth of emotional feeling and capability, and I didn’t understand why.
“Smell creates an incredibly important and emotionally evocative connection with other people, and if you take that away it creates a distance. It’s something I still find challenging.
“Then in 2011, after another relationship had ended, a friend sent me an article in The Guardian with an extract from a book called Season to Taste by American chef Molly Birnbaum. I went on to read the entire book and it was an enormous light bulb moment for me.
I started to learn for the first time about the sense of smell, how it contributes to our lives and the many emotional and quality of life impacts of smell disorders. I realised that I wasn’t the only person on the planet with this issue.
Duncan began researching the sense of smell and techniques that may help, and eventually made contact with Professor Carl Philpott, who had founded the first NHS taste and smell clinic in the previous year. It was at this point that he realised he wanted to use his negative experience to positive effect and fulfil a need that was unmet, so he founded Fifth Sense, the charity for people affected by smell and taste disorders.
“I wanted to create an organisation that would support other people and stop them having the same experience that I did.
“I came up with the name Fifth Sense because smell is often seen as the fifth and least important of the senses, but it’s also saying to people that we only have five ways in which we connect with the world around us. They’re all equally important, they just work in different ways.
“The people we represent often face a lack of understanding and empathy, including from the healthcare profession. That can result in them not getting the care and attention they need from doctors.
“The vision of Fifth Sense 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.
“I’ve seen time and time again over the years that if you can have a conversation with someone and get across to them the significant contribution smell makes to our lives, they’re better able to understand the impact of losing it.
Asked what advice he would give to people who find that their sense of smell and taste has been affected by brain injury, Duncan said: “Talk about it and get support. There is an enormous amount of value to be had in connecting with someone who understands, and that’s one of the key reasons why Fifth Sense exists, to help people make those connections.”
You can also find more information in the Headway factsheet Loss of taste and smell after brain injury, which you can download below.
Friends of Headway Individual membership Join/Renew