Staff at one of the world’s leading companies in the fragrance and flavour business have recently been supporting Fifth Sense in a key area of our work whilst raising £1,750 to support the charity through a variety of fundraising activities.

Firmenich is the world’s largest privately-owned company in the fragrance and flavour business. They are responsible for creating flavours and fragrances found in many household brands. Staff at the UK fragrance division in Southall came together at the annual Firmenich Community Day on 1st October and utilised their collective skills, experience and creativity to design and create a number of prototype smell training kits for use by Fifth Sense members.

The Firmenich team in action supporting Fifth Sense – click the image to enlarge

Fifth Sense Founder Duncan Boak was invited to visit Firmenich following the presentation he gave at the 2014 International Fragrance Association UK Fragrance Forum, where he described the devastating impact that olfactory disorders can have on patients’ quality of life.  On his first visit to the Southall site he met members of the management team including UK General Manager Gary Nelson, Global Category Manager Carlos Almasque and Master Perfumer Martin Koh.

Duncan explained how smell training – with which Martin and other Firmenich perfumers are very familiar – can benefit people who have suffered olfactory loss and how Fifth Sense has been developing a smell training kit.

Martin assembled some fragrance ingredients and Carlos and Duncan drafted a brief for Firmenich staff to design a prototype kit.

Carlos then launched ‘the Nose Factor’ on Community Day, and Firmenich staff worked in teams to brainstorm ideas and create kits.  The entries were then evaluated by a panel of ‘Nose Dragons’ – Duncan and his team of Fifth Sense members, who had the very difficult task of picking a winner from the array of brilliant kits.

Another Firmenich team accepted the challenge of creating dishes that could be enjoyed enjoyed by anosmics; they did this by wearing nose clips that deprived them of the ability to perceive aroma and flavour, forcing them to focus on how their other senses as well as elements such as texture and appearance might be highlighted. The Dragons were called in to judge the results.

Global Category Manager Carlos Almasque presents Fifth Sense founder Duncan Boak with the money raised by the Firmenich team

During the afternoon, the Firmenich teams formed a production line to assemble 21 smell training kits based on the winning design.

While the day ended with prizes being awarded to the Firmenich staff who prevailed in these friendly competitions, the real winner was Fifth Sense, which benefited from the talent, enthusiasm and tremendous generosity of Firmenich staff.  The smell training kits were given out to Fifth Sense members to trial at the annual conference on 1st November.

We would like to say a big thank you to the Firmenich team for all their efforts in support of Fifth Sense.

We’re delighted to announce details of an exciting partnership with FlavorActiV, the world’s leading sensory training and taster management company.

FlavorActiV consists of a highly-skilled team of professional taste trainers who use the company’s flavours and sensory tools to train, analyse and support tasting panels across the global beverage industry. In simple terms, they take ‘average’ tasters and turn them into consistent, reliable tasters through targeted training.

The hope is that they will be able to use these skills to support Fifth Sense members to recognise and re-learn tasting abilities.

FlavorActiV deliver the ‘Taste, Train Enjoy’ workshop at the 2015 Fifth Sense conference

To give an idea of the background to this, an important area of our work is around educating people on the distinction between smell and taste, and how the two combine to create flavour. Part of that involves helping people who have suffered olfactory loss become aware that this doesn’t necessarily mean complete loss of taste.

This draws directly on the experiences of Fifth Sense Founder Duncan Boak and other Fifth Sense members who have learned to appreciate the nuances of their ability to perceive basic tastes – sweet, sour, salt, bitter and umami – and utilise this when cooking and enjoying food and drink.

We believe that the partnership with FlavorActiV gives us a great opportunity to help many people become better aware of their own tasting ability and learn to appreciate what they can still detect, as opposed to focusing on what they are missing out on. It is going to be a learning experience for both parties, of course; as far as we are aware, no-one has ever tried to develop any sort of taste training for people who have suffered olfactory loss before.

Fifth Sense members at the ‘Taste, Train, Enjoy’ workshop

We are incredibly excited about the opportunities afforded by the partnership.  FlavorActiV are running a pilot study in early 2016 with a group of Fifth Sense members who volunteered at our annual conference in November and we are looking forward to sharing news on further developments in due course.

To read more about the partnership and 2016 pilot study visit
http://www.flavoractiv.com/about/fifth-sense

To read FlavorActiV’s open letter to Fifth Sense members click here

The third annual Fifth Sense conference on October 31st and November 1st run in partnership with the University of Surrey and supported by FlavorActiV was a highly successful coming together of Fifth Sense members, clinicians and researchers, sharing experiences and knowledge to advance our understanding of smell and taste disorders.

Fifth Sense founder and chair Duncan Boak opened the conference, themed ‘Let’s Talk Smell and Taste’, by describing how consolidating the structure of Fifth Sense and developing near and long-term objectives has been a key focus of 2015.

Some highlights of 2015 include:
– defining the roles and responsibilities of the members of the Fifth Sense board of trustees to guide and advise based on areas of personal/professional expertise
– fostering ties to parties relevant to Fifth Sense’s focus – notably agreeing a partnership with FlavorActiV
– a successful social media campaign entitled ‘Long Lost Smell’ for Anosmia Awareness Day 2015, which invited participants to share their significant aromas both good and bad
– Fifth Sense’s progress towards becoming a registered charity
– forthcoming launch of a redesigned and more user-friendly website

Duncan described the genesis of Fifth Sense and re-emphasised its commitment to supporting members; raising awareness among medical professionals, educators and other influencers and encouraging more public discourse through media and other channels, to push these hidden disorders to the fore – hence the theme ‘Let’s Talk Smell and Taste’.

Next, Richard Boughton, CEO of FlavorActiV, addressed his own route into a career dominated by the ability to smell and taste, first as a brewer and now as the leader of a global team of professional taste trainers who use the company’s own range of flavours to train tasting panels across the beverage industry. Richard talked about how FlavorActiV had learned about Fifth Sense’s work and how they aim to use their skills and expertise to help Fifth Sense members become better aware of their own taste/flavour perception abilities.

Dr Darren Logan

The remainder of the morning was devoted to a number of engaging presentations by clinicians, scientists and researchers including Consultant ENT Surgeon Mr Carl Philpott and Dr Darren Logan of the Wellcome Trust Sanger Institute/Monell Center as well as a Q&A session  for audience members with ENT Consultants Miss Lisha McClelland and Mr Philpott. These covered current understanding and treatment of disorders in terms of potential remedies and how patients are treated and guided by GPs and Consultants. Following this there were short presentations from Mr Philpott, Dr Logan and researchers Dr Lorenzo Stafford (University of Portsmouth) and Dr Jon Silas (University of Roehampton) around ongoing research and future possibilities.

The various workshops provided the opportunity to discuss a wide range of issues relating to smell and taste disorders

Following lunch, Fifth Sense members participated in condition-specific workshops. Discussion took place around what further support and information people wanted to see from Fifth Sense on specific causations and also how members felt future research should be directed. The outcomes of each workshop were then then fed back and discussed in the closing session. Duncan and members of the Fifth Sense team are going to be meeting in November to discuss how the ideas that came out of the sessions can be taken forwards.

On the Saturday evening members of the Fifth Sense team and guests convened at a pub in Guildford for a chat over some liquid refreshments – just what was needed after a day of thought-provoking discussions!

The second day of the conference featured a range of interactive workshops targeting quality of life aspects of smell and taste disorders. Some of these were focused on providing practical support and advice such as the ‘food and cooking’ session led by Duncan Boak and Adrian Wellock which generated a great deal of discussion amongst the participants around increasing the enjoyment of food by paying more attention to other sensory elements in food such as texture and spiciness.

Liam Singleton leads the tasting element of FLavorActiV’s Taste, Train, Enjoy workshop

The ‘Taste, Train, Enjoy’ workshop provided an opportunity for open discussion on how FlavorActiV’s tools and taste trainers could be best utilised to support Fifth Sense members. The liquid taste and smell samples were used to spark a wider conversation about the practical use of ‘Take Home Taste Kits’ for self-diagnosis and independent training, and to offer the opportunity for members to volunteer to form part of a pilot study to learn the true value of bespoke, continuous taste training to improve taste/flavour perception abilities. More details will be released soon, but encouraging first steps were made and the FlavorActiV team received some invaluable feedback from members to help guide future activities.

Smell training

The ‘Smell Training’ workshop also had a practical element, with Duncan talking about the rationale for smell training and what Fifth Sense has learned from the fragrance industry, particularly around ways of communicating and describing smells. This led on to guests being given some prototype smell training kits which have been developed recently for Fifth Sense members to trial by staff from an organisation in the fragrance industry. Duncan and Tom Laughton guided people through the kits and gave advice on how to use them effectively.

Sharing Olfactory Experiences – communicating smells and memories through art

Kate McLean’s smell walk

There was also a great focus on helping Fifth Sense members come to terms with sensory impairment. Tom Laughton’s ‘coping with the loss of a sense’ session gave participants the opportunity to express what their loss has meant to them and gain understanding from others through doing so. Kelly Benneworth-Gray and Kate McLean ran workshops that explored different ways of communicating and sharing olfactory impairment. Kelly’s session focused on the language of olfaction and the challenges associated with describing olfactory disorders. Kate’s workshop involved participants creating visual representations of their perceptions of the olfactory world followed by a ‘smell walk’ that encouraged participants to share their retained memories of smells.

Special mention must go to University of Surrey’s Lakeside Restaurant led by Head Chef John Walter and Restaurant Manager Rhian Jones for the delicious lunch that was provided on the Sunday which featured a spicy beef chilli alongside a milder mixed vegetable chilli. Accompaniments included hand-made tortilla chips (described as ‘historic’ by one guest), spiced beetroot-infused sour cream with walnuts and a pomegranate, mango and sweetcorn salsa. Dessert was a damson sorbet made with some of John’s homemade damson gin which was extremely popular!

Overall it was another highly successful conference and we are already making plans for Fifth Sense events in 2016.

We’d like to say a big thank you to the following people for their part in making this year’s event such a success:  Special mention to Charlotte Beebe for all her hard work in organising and running the event (and her mum for coming along and assisting on the Saturday), Julia Gerhold, Rhian Jones, John Walter, Tony Webber and the rest of the team at the University of Surrey, Richard Boughton, Liam Singleton, Martin Thomas and all at FlavorActiV, Kelly Benneworth-Gray, Tom Laughton, Darren Logan, Kate McLean, Miss Lisha McClelland, Sarah Page, Mr Carl Philpott, Alex Reilly, Jon Silas, Lorenzo Stafford, Adrian Wellock ….and, of course, to all the guests who joined us on the day.

All photographs courtesy of Sarah Kathleen Page: http://www.sarahkathleenpage.co.uk

The 2015 Fifth Sense conference will be taking place on 31st October and 1st November at the University of Surrey in Guildford. 

For an idea of what to expect at our conference, here’s a short video filmed at the successful 2014 event:

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‘Let’s Talk Smell and Taste’
This is our theme for the 2015 conference.  We want to encourage those of you who are affected by a smell/taste-related disorder to talk about your condition and how it affects you.

The Sunday workshops will also be a good opportunity to talk about any ways you may have of coping with your condition so that everyone can learn from these shared experiences.
We’re also encouraging you to attend with your partner, or perhaps a friend or family member, so they can gain a better understanding of what it means to have a smell/taste disorder.

We’ll be carrying the ‘Let’s Talk Smell and Taste’ theme on into 2016 as part of our efforts to encourage the wider public to better appreciate these senses and become more aware of the impact that smell and taste disorders can have.

Saturday 31st October:  Clinical Information and Research Day
Day one of the conference is for anyone who wishes to find out more about smell and taste disorders, existing treatments and the possibilities that future research may bring. 
– The science of smell and taste and how both senses work
– Different types of smell and taste disorders, their causes, and potential treatments.
– Current and future research
– ‘Consultant Q&A’ session where audience members will have the opportunity to have their questions answered by Consultant ENT Surgeons Mr Carl Philpott and Mr San Sunkaraneni.
– Condition-specific group sessions for Fifth Sense members with the opportunity to have your say into how research should be directed in future
– Meet some of our volunteer Regional Coordinators (both Saturday and Sunday)

Sunday 1st November: Support and Advice Day
Day two has been designed specifically for Fifth Sense members with a strong emphasis on mutual support and workshops focused on helping you find better ways of living with your condition 
– A choice of workshops focused on different aspects of living with a smell/taste disorder led by Fifth Sense members and experts from the worlds of food, drink and fragrance
– Topics covered include: sharing olfactory experiences past and present, the language of olfactory disorders, coping with the loss of a sense, smell training, ‘Taste, Train and Enjoy’ with FlavorActiV and food and cooking tips
– There will also be open sessions running all day with no set topic or agenda – perfect if you wish to meet new people and chat
– Special lunch menu provided by the team at the University’s Lakeside Restaurant

On the Saturday evening we’ll be organising some sort of social gathering for anyone who wants to join us, details will be confirmed nearer the time.

Loaction
The University of Surrey, Guildford, Surrey, GU2 7XH

Tickets
Weekend Tickets – £114.50 (includes tea and coffee on arrival, lunch and booking fee)
Individual Day Tickets – £62.50 (includes tea and coffee on arrival, lunch and booking fee)

Accommodation is not included in the weekend ticket price above, however we will be providing details of local accommodation when tickets go on sale.

Tickets will be on sale soon.

Fifth Sense’s North East Regional Hub had its first meeting on 1 July 2015. Linda Adamsom, Mark Tavender and Neil Harrison met at the Pitcher and Piano on the Quayside, Newcastle. There was a keen interest from other members in the North East too but not all could attend. After all,the North East Regional Hub  covers a large area; Tyne and Wear, Teesside, Durham and Northumberland!

Linda, Neil and Mark talked about their stories with each other and how they came to lose their sense of smell or taste. They found they had a lot in common when it comes to coping with situations in everyday life. Neil is a talented cook but sometimes worries that he is unable to smell or taste the food he is preparing; his wife and dinner guests however soon put that right though when they devour whatever he has cooked for them! Linda often receives praise for dishes she cooks for family and friends too; her very description of the potato, garlic and layered vegetable dish that is a family and friends’ favourite made Mark’s and Neil’s mouths water. Mark couldn’t claim such culinary talents other than to add chilli to most dishes he now cooks (with the exception of breakfast).

All three hope that this meeting is the first of many and want to see it expand and have some ideas for events and fundraising. They will definitely be keeping in touch so if you live in the North East why not get in touch yourself?

To contact the Hub please visit https://www.fifthsense.org.uk/north-east/

BACO is the leading event for the UK ENT (Ear, Nose and Throat) profession.  The British Academic Conference in Otolaryngology attracts over 1000 delegates from all over the UK and much further afield.  The event happens once every three years and this year’s conference was the first one that Fifth Sense had the opportunity to attend.  Given that it is attended by so many ENT Consultants and others associated with this area of clinical practice it seemed like a very good opportunity to get our message that smell and taste matter across to an important sector of the medical profession.

We’re very pleased to say that our participation was a resounding success.  Fifth Sense had prime place at the conference with a stand right at the entrance to the exhibition hall, which gave Duncan Boak and Tom Laughton the ideal location to engage with delegates, aided by a large bowl of chocolate which was on offer to anyone who was prepared to hold their nose and experience the impact of smell loss on flavour perception.

We spoke to a large number of ENT Consultants and the message we got from many of them is that they are are aware of Fifth Sense, very supportive of the work that we are doing and recognise that smell and taste disorders can have a huge impact on the quality of life of their patients.  We’ve seen this awareness and understanding improve over the last couple of years, due in part to our efforts to engage with the ENT profession, for example at the 2014 BRS meeting – the nose clip activity seems to have made a lasting impression on those present!

We do of course recognise that greater understanding and support for our cause might not do much to help anyone affected by a smell and taste disorder at this moment in time, but we do need the ENT profession to be behind us.  If our work can encourage more clinicians to specialise in smell and taste disorders, to carry out more research, then it can only benefit us all in future.

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We also spoke to a number of other individuals and organisations who are interested in the work we are doing and potentially working with us or supporting us.  We’ll be following up on these discussions over the coming weeks.

Duncan and Tom came away feeling really pleased at how the event went, and you can get Tom’s perspective from the video above.  We’re hoping to be back at BACO in 2018.

Fifth Sense would like to thank Janet Mills and the rest of the conference team for organising such a successful event and for their support of Fifth Sense. 

‘A Slice of Sensory’, the Sensory Science Group Annual Conference, was held on 18th May 2015 at the East Midlands Conference Centre.   The Sensory Science Group welcomes anyone with an interest in the sensory and hosts regular discussion workshops in addition to their annual conference.

Chrissi Kelly was a guest at A Slice of Sensory and gave a poster presentation on smell training, following her own experience of following this process as she regained some of her olfactory ability in 2014.  Chrissi lost her sense of smell as the result of a virus, and although things have improved in the last year or so, she experiences parosmia (distortions of the sense of smell) so that things don’t smell the same as she remembers them to.  She’s therefore had to re-learn smells, as if for the first time.  Spontaneous recovery of some degree of olfactory ability can occur following post-viral anosmia but unfortunately parosmia is quite a common side-effect with this type of smell loss, so Chrissi’s experience of ‘everything smelling new’ isn’t unusual.

Chrissi was one of only five of eighteen delegates at the conference invited to give an oral presentation alongside her poster, and things got better still as she (fully deservedly in our view!) won the prize for best poster as the result of a vote amongst delegates.   We’re sure you’ll join us in congratulating Chrissi and thanking her for playing her part in helping raise awareness of olfactory disorders, the potential benefits of smell training and Fifth Sense.

For more information on smell training visit www.fifthsense.org.uk/smell-training

Fifth Sense’s volunteer-led Regional Hub network forms the foundation of our efforts to bring Fifth Sense members together to meet, share experiences, make new friends and have some fun along the way.  Here’s some news on a couple of recent get-togethers.

For more information and to join our developing network please visit www.fifthsense.org.uk/regionalhubs.  We would welcome more volunteers, particularly from areas where we don’t have a volunteer Regional Coordinator in place already.  For information on how to volunteer visit www.fifthsense.org.uk/volunteering

Thames and Chiltern (Bedfordshire, Berkshire, Buckinghamshire, Hertfordshire, Oxfordshire)

Volunteer Regional Coordinator Alison Crowe recently organised her first meeting of members in Beaconsfield, near High Wycombe, on Saturday 11th April.  Here’s Alison:

It went really well and It was lovely to meet some members from the region and get to know them a little.  People were also very interested to hear about the FS conference and everyone was happy to take some Fifth Sense flyers with them to distribute in GP surgeries.  

If you live in the Thames and Chiltern region and wish to get in touch and join Alison’s group then you can email her at Thames@fifthsense.org.uk

Eastern (Cambridgeshire, Essex, Norfolk, Suffolk)

Dan Kunkle very kindly opened up the doors of his Cambridge home on Saturday 16th May and hosted an ‘Anosmic Smorgasbord’ – a lunch for Fifth Sense members with everyone preparing and bringing a dish.  Some really delicious food was eaten on the day, with the focus being on strong basic tastes, textures and bright colours.  Cucumber with chilli and soy sauce, a salad of bitter radicchio and sweet mandarin, and nutty bulgur wheat salad with a preserved lemon, mint and sumac salsa were just some of the highlights.

L-R: Natalie, Fenglin, Marjorie, Roy, Lizzy and Dan

Over lunch everyone had the opportunity to talk about their own experience of living with an
olfactory disorder, the challenges this brings, and ways of dealing with them.  One thing everyone agreed is that getting together and sharing experiences is a really important and positive thing, and another get-together is going to be happening in the near future.  If you’d like to get involved then please get in touch,

If you’d like to get involved with the Eastern hub then please drop Dan an email at Eastern@fifthsense.org.uk

On Friday 15th May we had a stand at the 2015 British Rhinological Society (BRS) meeting which was held at the Manchester Central Conference Centre.  The BRS is a sub-group of ENTUK, with membership consisting mainly of Consultants and Registrars who work in the field of rhinology – the nose and sinuses.  The majority of members, therefore, are used to seeing patients with olfactory disorders in their clinics.

If you’ve been following us for a while you may remember we participated in last year’s BRS meeting where we demonstrated the impact of smell loss on flavour perception – with the help of some nose clips.  Click here for more info.

This year Fifth Sense’s Duncan Boak, Chrissi Kelly and Ian Maude left the nose clips at home and went along to promote the support we offer, for example via our volunteer-led Regional Hub support network, and information and advice via our newsletters.

What was really positive was the fact that every clinician we spoke to was already aware of Fifth Sense (many of them remembered the nose clips from last year!) and are already directing their patients to us.

The BRS meeting also includes numerous talks and presentations.  One of this year’s sessions will be of particular interest to many of our UK-based Fifth Sense members.  Archana Soni-Jaiswal, Carl Philpott and Claire Hopkins presented a research paper: The Impact of Commissioning for Rhinosinusitis in England.

Rhinosinusitis is a major cause of anosmia and hyposmia.  This study looks at the practices of 58 Clinical Commissioning Groups (CCGs – NHS organisations set up in 2012 to manage the delivery of healthcare across England) to find out how many of them complied with the commissioning guidelines on the treatment of rhinosinusitis (which can be viewed on the Royal College of Surgeon’s website here).  It found that whilst 51 of the 58 studied do follow the guidelines, there are 7 that have ‘restricted referral criteria’ in place, i.e. they do not encourage GPs to refer patients to an ENT specialist within the time frame recommended by the guide.  There are also other ways in which the practices of some of these 7 CCGs differ from the guide.

What this means is that patients within these 7 CCGs are potentially being treated differently to patients in other parts of England and are thus victims of a ‘postcode lottery’.  This is against the NHS constitution and open to legal challenge.

Although we are not able to publish the research paper here in full, we are planning on producing a summary of it and making this available via our website in due course.

All in all it was a really successful visit to this year’s BRS meeting and we plan on being there again in 2016.

Fifth Sense’s Duncan Boak and Chrissi Kelly were invited by the Perfume society to attend one of their regular ‘How to Improve Your Sense of Smell’ workshops in London on 23rd April 2015. The workshops are designed to help Perfume Society Subscribers develop their olfactory ability and are delivered by the organisation’s co-founder Jo Fairley.

Duncan and Chrissi attended to find out what techniques the Perfume Society recommends and whether these can be of benefit to Fifth Sense members who are undertaking their own smell training.

L-R: Chrissi, Jo and Duncan

Many Fifth Sense members will appreciate that the sense of smell is greatly underdevalued in our society and that many people take it for granted. As Jo explained, improving one’s sense of smell starts with awareness; not just paying attention to what you’re smelling, but describing the smell in words, and writing these down.

But how to describe a smell? Well, that doesn’t really matter. The same smell can be perceived very differently by different people, so there’s no right or wrong answer.  Jo and her colleagues encourage workshop guests to smell in silence and write down what the scent makes them think of – colours, textures, places, situations.  For example: ‘The smell of an old leather-bound book, sitting on a oak bookcase in a Victorian library, through which cigar smoke is gently blown’.  Words and associations are as important to our perception of smells as the scents themselves.

So what does this mean for Fifth Sense members?  Well, smell is closely linked to memory, and many people with anosmia will still possess memories of smells. Used alongside smell training, language can help make the connection between any odour detected by the nose and these stored memories.  The human brain has amazing plasticity – that is, it has the power to change, with new connections (or neural pathways) being formed in response to stimuli.  These stimuli include things we practice and learn, such as the piano, dance steps, or training the sense of smell.  For someone with anosmia/hyposmia whose sense of smell is starting to improve, odours are the stimuli that form new pathways to olfactive memories.  It’s a little bit like re-wiring the brain.

This is one of the reasons why Fifth Sense recommends smell training to people affected by anosmia or hyposmia.  Whilst there are, inevitably, circumstances where it isn’t going to help (smell loss that has been caused by removal of the olfactory bulb following brain surgery, for example), if you have lost your sense of smell as the result of a virus, head injury or because of sinus problems it is worth giving it a try.

A really important aspect of the workshop for both Duncan and Chrissi was being in the presence of people who are really engaged with their own sense of smell.  Listening to the descriptions of the different fragrances (such as the book in the library described above) can really help jog memories of smells.  Here are Chrissi’s thoughts on the importance of this:

‘For people who find themselves with inklings of recovery after anosmia, there can be no greater thrill than time spent sampling beautiful smells – however limited that experience feels – in the presence of others. Smell training alongside people who have a good sense of smell assists us. It’s like getting a hand up over an obstacle, or having someone explain the line in a film that you didn’t quite hear. But most importantly, this kind of event reminds us that smelling is social, and it can bridge the feelings of isolation often associated with anosmia’.

We’d like to thank The Perfume Society for inviting Duncan and Chrissi to the workshop.  How to Train Your Sense of Smell is one of a range of events open to Perfume Society Subscribers.  For more information visit http://perfumesociety.org