SmellTaste members in Scotland have had another wonderful social event, this time a ‘tasteless’ meal for their Christmas get-together.

Volunteer and organiser Julie explained that the event was billed as ‘tasteless’, for those with smell and taste disorders, but the meal was anything but!

The group went to an Indian restaurant, Tabla in Perth, where they were well looked after and treated to a fantastic meal. Everyone had a great time and Julie and co recommend the restaurant if you find yourself in Perth.

If you’d like to join our Scottish Support Hub and be kept updated on future get togethers then email volunteer Julie Wilson at Scotland@fifthsense.org.uk 

 

 

The 2017 SmellTaste Members Conference was held on 5 November at St George’s Conference Centre in Leeds and we’re delighted to say it was a really positive and successful event.  This was our fourth Members Conference and the first since the 2015 event at the University of Surrey in Guildford.  We decided to hold the 2017 event in Leeds to make it more accessible for members in the North of England, following feedback we’d received in our 2016 membership survey, and it was great to meet lots of new members whilst welcoming back people who attended the 2014 and 2015 events.

BBC Radio 4 presenter Kathy Clugston opened proceedings with a fantastic talk on her experience of being born without a sense of smell, and the journey she undertook to learn more about her condition, which was the subject of a 2016 radio documentary, the Neglected Sense.  Kathy talked about how she’s met many other people affected by smell and taste disorders since then, and set the tone for the rest of the conference by saying how important these opportunities to learn from each other and and experts including clinicians and scientists are.

Consultant ENT Surgeon and SmellTaste trustee Prof. Carl Philpott then gave an overview of smell and taste disorders, their causes and treatments. There was then a Q&A session where guests had lots of time to ask questions and share their stories. We were also able to provide answers to people who weren’t able to attend the conference. This was a very important part of the day, because as many of us know, it can be very difficult to obtain useful information and advice from healthcare professionals.

The attendees were then treated to a delicious lunch provided by local business Manjit’s Kitchen, including a paneer curry and a South Indian lentil dhal with a lime-infused salad.  We always try to put on a good lunch for our events, and we were delighted with this one. Manjit received several emails from SmellTaste members thanking her for the fantastic food and all her hard work, and we’ll be going back to her for catering next time we’re in Leeds.

Dale Smith from our partners FlavorActiV then gave an update on the Taste, Train, Enjoy pilot project, which is focused on helping people affected by olfactory loss better understand and utilise their sense of taste. This included a tasting session of bitter tastes at different concentrations, which went well, with most guests being able to detect the bitter tasting samples.

One point that came up from this test was if people can taste bitterness, how can they use it in their cooking, and what types of foods should they try.  Providing practical advice on this is going to be a crucial part of the next phase of the project, and we’re currently in discussions with FlavorActiV on next steps.  Watch this space!

Next, chocolatier Fiona Sciolti gave a talk and demonstration of chocolates which she’s specially developed for people with olfactory loss. She explained that this came about from attending many food road shows where she was approached by people eager to taste her sweets, but who couldn’t appreciate them because of their smell impairment.   The chocolate tasting was really enjoyable and many thanks to Fiona for sharing her passion with us.

Prof. Philpott then gave some updates on a number of research studies that have recently taken place.  We were then  extremely privileged to be joined by Dr Steven Munger, Director of the University of Florida Center for Smell and Taste. Dr Munger talked about the huge success of the SmellTaste2017 event, and how patient involvement and empowerment was a key driver for the development of a new clinical programme for patients with smell disorders at UF Health.

There was then a report from the SmellTaste Trustees, presented by Duncan Boak. A key highlight was the news that our application for registered charity status has been approved by the Charities Commission, news of which was received the day before the conference.  Read more here.

The day ended on a high with Prof. Philpott playing a video of his epic bike ride from Land’s End to John O’Groats, which he undertook to raise money for SmellTaste (read more here), followed by a raffle of chocolates kindly donated by Fiona.

We’d like to say a huge thanks to all our guests, speakers, and volunteers who helped make the event possible, to St George’s Conference Centre for hosting the conference, and to Manjit for the wonderful lunch.  We’re already looking forward to the next SmellTaste event!

We recently received some great news from Consultant ENT Surgeon Mr Paul White at Ninewells Hospital in Dundee.  Mr White and fellow clinician Richard Green gave a presentation on smell and taste disorders in partnership with  SmellTaste member volunteers, Julie Wilson and James Martin, at ENT Scotland meeting in the summer in front of an audience of ENT clinicians from across Scotland.

The meeting organisers advised Mr White that this joint presentation received the highest score of all presentations in feedback from delegates.  Fantastic news that demonstrates the value in patients and clinicians working together to educate the wider medical profession on the impact of smell and taste disorders, something that has been a key element of SmellTaste’s work from the very beginning.  We’d like to thank James, Julie, Paul and Richard and look forward to further opportunities to work together in future.

We are delighted to announce that SmellTaste has been awarded registered charity status. Our board of trustees put together a detailed and thorough application to the Charities Commission, which was approved the day before our conference, and our charity number is 1175553.

SmellTaste has been a charity since we formed our board of trustees, ratified our first constitution and set out our charitable objects in January 2014. Becoming a registered charity is an important step forwards and can give an organisation greater legitimacy in the eyes of the public and potential funders.  It will enable us to move forwards with our strategic vision and  do more to support more people with smell and taste disorders.

We’d like to say a huge thanks to all our members, supporters and donors for helping us reach this important milestone and we look forward to exploring the opportunities this presents in 2018 and beyond.

SmellTaste 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 SmellTaste 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, SmellTaste 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 SmellTaste 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 SmellTaste volunteer Joanne Dixon at Newcastle@fifthsense.org.uk

 

We spotted an interesting story recently that illustrates how the sense of smell seems to be increasingly valued by product designers. Brooklyn-based Flavor Paper has been inspired to create scented wallpaper, with three brightly-coloured designs that are decorated with the fruits they’re fragranced with. There are three to choose from – cherry, banana and tutti frutti – and the smells are an optional extra.

The paper is embedded with micro-capsules which release the scent when scratched, and will apparently last a few years.  Those of us with no sense of smell at all may prefer Willy Wonka’s lickable wallpaper, and although there’s no sign of that yet we’ll be sure to let you know if we anything changes!

You can read the full story on the website of SmellTaste supporters The Perfume Society.

University of Florida Health is launching a new clinical programme for patients with smell disorders – and SmellTaste played an important role in its conception.

Physicians in UF Health’s department of otolaryngology are teaming up with the University’s research-focused UF Center for Smell and Taste (UFCST) to launch the UF Health Smell Disorders Program in early 2018.  Otolaryngologists John D. Harwick MD and Jeb M. Justice MD will be the clinical leads on the initiative, which aims to improve diagnosis and management of these conditions.

The idea for setting up the programme came from SmellTaste2017, the first major education/support event for people in the US with smell and taste impairments which was delivered by UFCST in partnership with SmellTaste.  UFCST Director Dr Steven Munger says that patient feedback at the event was an important factor in taking the decision to launch the programme.

For more information, read the press release at () or visit the UF Health Smell Disorders Program website at http://smellclinic.cst.ufl.edu

Everyone at SmellTaste is delighted with the news that trustee Prof Carl Philpott has completed his epic bike ride from Land’s End to John O’Groats, which he did to raise awareness and sponsorship for our charity.

The ride took nine days, finishing late in the afternoon of 17th September – Carl went into work the next day! So far, he has raised in excess of £6000 (plus Gift Aid) and the board of trustees would like to thank him again for all of his hard work and support.

Mr. Philpott managed to fit in some time to sit down with us and answer some questions about what made him decide to undertake this gruelling event, and what he’s going to do next:

1.Why did you decide to do this particular challenge? Since SmellTaste’s inception I had wanted to do a major fundraising event; in 2015 I started getting into road cycling after buying a new bike on the cycle to work scheme. At the same time my friend entered the Deloitte RAB and inspired me to want to take on that challenge.

2. Can you tell us a little bit about the training? It was a slow build up after Christmas with a minimum of 1 sportive per month (70-100 mile events) –  Northamptonshire (Feb), York Vale (Mar), Tour de Broads (Apr), Peak District (May), Norwich 100 (June), Suffolk Spinner (July), Norwich Cycle Club 100 (August). During July I also took to the hills of Somerset (Cheddar Gorge, Mendips) and Malvern.

In between that I used my turbo trainer at home twice a week and did the Ride Across Britain route virtually as far as Fort William. I also took the long route to work when cycling in and even did things like cycling to the chip shop for a take away after a 15 mile detour! I used the Strava phone app to track my progress and monitor mileage – during August I tried to cycle 5-7 days/week even if only 10-20 miles each.

3. What was the toughest part of the ride? Four key bits – coming off the Mendip hills in biblical rain followed by a puncture 3 miles from base camp (day 2), Carlisle to Hamilton into a headwind on a seemingly unending straight road (day 6), cycling 128 miles over the Highlands to Fort William (day 7) and then finding the motivation to get in the saddle again the next day, and finally the northern coast towards John O’Groats – not easy, lots of ups and downs that sapped us when we thought we were on the home straight!

4. What were the highlights/best bits of the ride? Cheddar Gorge, Scottish Highlands, the view of the Dornoch Firth as we descended towards it, but the beauty of the Shropshire countryside and the Wye Valley were my favourites.

5. Would you do it again? Yes, but not in 2017! I quite fancy doing the opposite diagonal from Dover.

6. Are you planning any more adventures that SmellTaste members could sponsor you for? Not yet, but am sure to think of something in due course! The donation page will be open until December, so if you’d like to contribute, you can do so here: https://mydonate.bt.com/fundraisers/carlphilpott1

 

 

 

SmellTaste led a symposium at the 2017 European Chemosensory Research Organisation (ECRO) meeting to showcase the importance of patient engagement to scientific and clinical research.  ECRO supports young scientists to secure grants to help them at the start of their career, and provides all scientists with a forum and collaboration opportunities through the annual congress. You can find out more about them here.

Duncan Boak introduced the symposium, explaining that SmellTaste acts as a hub that connects patients, scientists, clinicians, publics and others with interest in smell and taste. He said that the focus of the symposium would be on the benefits that these interactions have to all those involved.

 

Tom Laughton, one of our volunteer members, spoke about the impact that smell and taste disorders have on people’s lives, and asked the scientists to consider what these senses mean to them personally – beyond their scientific interests.

 

 

Prof Carl Philpott then talked about his experience of working with

patients in his role as Director of the UK’s first NHS clinic for smell and taste disorders.  He spoke about the vital role that SmellTaste members have played in providing PPI (Patient and Public Involvement) input into the design and delivery of clinical research trials, and how their experience s are helping demonstrate the need for further research into new treatments.

 

 

 

 

Steven Munger, Director of University of Florida Center for Smell and Taste, (UFCST),made a strong case for why chemosensory scientists should engage with patients, using the SmellTaste2017 conference as an example.

Finally, his colleague, Cedric Uytingco, presented the ongoing work of Jeffrey Marten’s laboratory around using gene therapy to restore olfactory function in mice, and what hope this might offer some patients. Learn more about UFCST here.

 

 

 

The team from SmellTaste were very pleased with how well the symposium was received by conference organisers and delegates, and we were delighted to not only showcase the range of collaborations our trustees and volunteers have been involved in, but also the impact that these have had on all those involved.

 

 

 

 

 

We’re delighted to announce that tickets are now on sale for the 2017 SmellTaste Members Conference which is taking place at St George’s Centre, Leeds, West Yorkshire on Saturday 4th November 2017.

Our first Members Conference since 2015 offers a rich learning experience in a supportive environment for anyone affected by a smell/taste disorder along with partners, friends or family.  Here are some of the highlights of the line up:

• Opening talk from BBC Radio presenter Kathy Clugston about her experience of congenital anosmia
• Prof Carl Philpott will give an overview of the causes of smell and taste disorders and existing treatments (followed by an hour for guests to ask questions and share their experiences)
• Director of the University of Florida Center for Smell and Taste Dr Steven Munger will be taking about the importance of patient engagement in driving forwards research into new treatments
• SmellTaste partners FlavorActiV will be presenting the successful results of the Taste, Train, Enjoy pilot study and delivering a tasting session
• Award-winning chocolatier Fiona Scioltini will be talking about her experience of making chocolates for people with anosmia (and there may be a free sample or two for guests to try!)
• A fantastic lunch will be provided by award-winning local business Manjit’s Kitchen – Indian street food with plenty of contrasting tastes, textures, and some spice (although there will be a milder option on offer).

 

Full details can be found here in the conference programme.

We have listened carefully to feedback from SmellTaste members following the last conference when organising the 2017 event, and are holding it in Leeds to make it more accessible for people in the North.  We have also tried to keep ticket prices as low as possible whilst aiming to ensure that we cover costs. Tickets cost £38.50 and include refreshments and lunch which we feel offers excellent value for money.

We do appreciate that the cost may be prohibitive for some, however, and have therefore set aside a very limited number of ‘pay what you can afford’ places for people on a low income who could otherwise not attend.  These are available on a ‘first come, first served’ basis and are limited to two tickets per booking.  If you would like to take advantage of this offer then please email us at events@fifthsense.org.uk

We really hope you’ll be able to join us!  For more information and to register, please visit https://www.smelltaste.org.uk/events/conference-2017  and we’ll look forward to seeing you there.