Fifth Sense held a patient information day in conjunction with clinicians from the Freeman Hospital in Newcastle and researchers from Newcastle University on 30th September. The day was an enormous success, and many attendees commented on how good it was to talk to others with sense and taste disorders, to hear shared experiences and to feel less isolated.
The day started with a presentation from Stephen Ball, ENT clinician from the Freeman Hospital, who explained the structure of the nose and olfactory system. Mr. Sean Carrie, ENT Consultant at the Freeman, spoke on smell and taste disorders from the view of the medical professionals, but he also touched on how this impacts on many aspects of daily life. He provided a list of questions a doctor should ask a patient who presents with olfactory disorders, and talked about the most common causes – sinus problems such as polyps and chronic rhinosinusitis, viral infections and head injuries.
Mr Carrie explained that whilst people are often told that their sense of smell is gone for good following a head injury or virus, it can return in some cases, although it’s very difficult to predict whether this will happen.
Next Fifth Sense volunteer Joanne Dixon talked about her experiences of parosmia, the medical term for a distorted sense of smell. Joanne said that after having a bad cold two years ago, she began to sense a putrid smell everywhere she went, and was acutely aware of scents around her.
She got a referral to Mr. Carrie, who prescribed gabapentin and theophylline – in Joanne’s case this suppressed the putrid smell. She found that she was unable to eat bitter foods, but nice smells gradually started to come back.
A delicious lunch was created by Sam Storey, research chef on a project led by Dr. Duika Burges Watson, of Newcastle University. The starter was summer rolls, which were rice paper wrappers filled with noodles, cucumber, carrots, lettuce and mooli and flavoured with herbs and peanuts. They were accompanied with a dipping sauce of lime, chilli and sugar. The main course was a pork and pepper curry and a sweet potato and squash red curry, both of which were flavoured with chilli, coconut milk, like juice, garlic, shallots and spices and served with jasmine rice. The curries were followed by a dessert was glutinous rice filled with red bean paste, accompanied with pineapple and black sesame sticks. Guests enjoyed the lunch, with people using words like zingy, crunchy and spicy.
After the break, Fifth Sense founder Duncan Boak spoke about the impact that smell and taste disorders can have on people’s enjoyment of food and drink, and the wider implications that this can have for people, given that eating and drinking form the backdrop to many of our social interactions.
Duncan talked about how the appreciation of other sensory modalities such as texture, temperature and basic taste can potentially help to compensate for a loss of ability to appreciate flavour. He also discussed the work we’re doing with our partners FlavorActiV to help people affected by olfactory loss better understand and utilise their sense of taste and feel more confident about trying foods.
Dr. Burges Watson then spoke about the Altered Eating research project, the result of her study into the challenges associated with eating and drinking following treatment for head and neck cancer. She explained that people’s relationship with food often changes, and talked about the Food Play workshops run by her and Sam that give people the opportunity to try preparing different foods and cooking in a relaxed, fun environment.
She was joined by project participant Val Bryant, who spoke movingly about the challenges she faced following surgery and subsequent recovery from throat cancer. She temporarily lost her sense of smell and taste, although these came back slowly. She attended some of the food play workshops and talked about how these had benefited her.
The Fifth Sense members who attended the information day told us that they’d learned a lot, and they’d been able to share their fears and concerns in a safe environment. There was an agreement that it was nice to have an event close to home, and Newcastle members would like more opportunities to socialise with each other, so in the coming months Joanne will be asking for feedback and suggestions from those in the area.
If you live in or around Newcastle and would like to be kept informed on any future events in the area then please email Fifth Sense volunteer Joanne Dixon at Newcastle@fifthsense.org.uk