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Fifth Sense 2015 Conference Preview

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:

‘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 at the 2015 British Rhinological Society meeting

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 Charity Launch – Report

IMG_0231Saturday 15th March was a hugely important day in the history of Fifth Sense, as we launched ourselves as a charity with an event that looked at the ways in which the senses of smell and taste play a huge role in our lives, and also highlighted the problems faced by people who suffer impairment of one or both of these senses.

The day consisted of an afternoon press launch featuring talks from some of the academics, scientists and researchers with whom Fifth Sense is working, personal experiences from Fifth Sense members, with Fifth Sense Founder Duncan Boak talking about how his own experience of losing his sense of smell following a head injury led to him establishing the organisation.  The press launch was followed by an evening drinks reception organised especially for Fifth Sense members to come and celebrate what we intend to be a much brighter future for smell and taste disorder sufferers everywhere.

IMG_0225The launch event was held in the Macmillan Hall, Senate House, London, and was delivered in partnership with the Institute of Philosophy at the School of Advanced Study, who are leading the AHRC Science in Culture project ‘Rethinking the Senses’, in which Fifth Sense is a partner.

Structured as a ‘past, present and future’ of the sense of smell, the event opened with a fascinating talk from Urban Sociologist Alex Rhys-Taylor of Goldsmiths College on the importance of the sense of smell to western civilisation throughout history, focusing on London. Starting with the Romans, who sited their sewage treatment in East London, away from their homes, Alex explained how the sense of smell directly influenced culture and society through the ages. He also explained that it was during the Age of Enlightenment in the late 17th and 18th centuries that the sense of smell started to be perceived as being of lesser importance than the senses of sight and hearing; smell began to be viewed as a primitive, animal, sense, of no relevance to the advances that were being in understanding the world through science.

Duncan4Alex was followed by Fifth Sense Founder Duncan Boak, who spoke about the different ways in which the sense of smell affects our lives, and the different types of smell and taste disorders.  He also spoke about the many different ways in which such conditions impact on the lives of sufferers, using anonymous comments from Fifth Sense members who have completed the ongoing Quality of Life of Smell Disorders survey.  Duncan’s slides can be viewed by clicking here.

Duncan then introduced Fifth Sense member Charlotte Self, who spoke candidly about how her loss of smell had a profound impact on her life, and how it directly contributed to the breakdown of her marriage. Charlotte’s powerful and deeply moving testimony clearly demonstrated just how disorders of the sense of smell can have far-reaching consequences for sufferers.

IMG_0326editDawn Millard and her nine-year old daughter Abi then spoke. Dawn started by explaining how she had realised that Abi had no sense of smell after noticing how she never made reference to smells that her friends would remark upon, and then spoke about how doctors she had seen lacked knowledge and failed to even see it as being a significant problem. Abi then delivered a superb presentation on the sense of smell and how important it is to our ABIlives, the same talk she had given to her classmates at school. Abi also talked about the sponsored swim she did recently where she raised an amazing £1125, and presented the cheque to Duncan. The work that Abi has done to raise awareness of anosmia and the importance of the sense of smell has been incredible, and we are going to have a special blog post about her story very soon.

IMG_0378editAfter a break, Mr Carl Philpott, Consultant ENT Surgeon at the University of East Anglia / James Paget Hospital spoke about the different causes of smell and taste disorders and what can be currently done to treat them. He also talked about the challenges faced in undertaking research to develop new treatments, the main problem being the lack of awareness and recognition for such conditions amongst the medical profession and funding bodies.  The slides from Mr Philpott’s talk can be viewed here.

Duncan then spoke again about how Fifth Sense intends to develop its work over the next three years, stressing the importance of continuing to develop Fifth Sense as a strong, supportive community for smell and taste disorder sufferers, and how this community will underpin the three key areas of Fifth Sense’s strategy; support, education and research.  Mr Philpott then IMG_0372editjoined Duncan to talk about the planned Fifth Sense National Smell and Taste Survey, which will gather data on the prevalence of smell and taste-related disorders in the UK and provide a huge boost to our efforts to improve treatment opportunities and research in future.

Fifth Sense member Chrissi Kelly then spoke about the ongoing Fifth Sense smell training project that she is playing a leading role in, and how her own successful experience of following this process has informed the creation of the Fifth Sense Smell Training Journal, which will be available for Fifth Sense members to test out very soon.

Leading researchers Simon Gane and Darren Logan then did a joint presentation that covered the work they are doing into improving our understanding of how the olfactory system functions, and how this can lead to better understanding and therefore treatment of smell and taste-related disorders in future.

IMG_0400editDuncan Boak and Professor Barry Smith of the Institute of Philosophy then talked food; Barry explaining the role of the sense of smell in flavour perception and what taste really is, with Duncan talking about his own passion for food and cooking and how he makes the most of the other senses available to him when creating meals.

Wine journalist Maggie Rosen then led the wine tasting session, which had two purposes – to demonstrate the impact that smell loss has on flavour perception to the journalists present (who were issued with a nose clip to ensure a level playing field!) and also show that smell loss doesn’t remove the ability to detect differences in wines.  We’ll be putting another post on the blog to cover this in more detail very soon.

IMG_0410editFollowing the conclusion of the wine tasting, we then welcomed Fifth Sense members for the drinks reception, at which Duncan and Mr Philpott both spoke about the success that Fifth Sense has achieved in the relatively short period of time since its inception in mid-2012, and about future plans.  Duncan and Abi then cut the beautiful cake made by Fifth Sense Member June Blythe especially for the occasion.  All in all, it was a hugely successful and special day – onwards and upwards!

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We would like to say a huge thanks to all our speakers and our guests at the press launch, and the many Fifth Sense members who came to celebrate with us at the evening drinks reception.

Special thanks goes to the following people for their support and assistance in the organisation and delivery of the event:  Natasha Awais-Dean, Prof Barry Smith and all at the Institute of Philosophy, Maggie Rosen, Abraham Drewry, Nayan Gowda, Keeley Sellers and Sally Turberville-Smith.  And of course, a huge thanks to June Blythe for baking the amazing Fifth Sense cake – what a wonderful surprise! 

Thanks to Fifth Sense member Sarah Page for the photography – visit                                      http://www.sarahkathleenpage.co.uk to see more of her work

What Does Your Sense of Smell Mean to You? Fifth Sense Charity Launch, 15th March 2014

FSNewBranding2014On 15th March 2014, Fifth Sense launches as the first charity working in the area of smell and taste-related disorders, and raising awareness of the huge role that the sense of smell plays in our lives.

The event will be a demonstration of the rapid advances made by Fifth Sense since its inception in 2012 in supporting smell and taste disorder sufferers, and act as a showcase for our plans to develop and grow our work over the next three years.  For more information on the event, please view the press release here.

The Fifth Sense launch is being held in partnership with the Centre for the Study of the Senses, at the School of Advanced Study, as part of the AHRC Science in Culture project ‘Rethinking the Senses’, and will be preceded by an interdisciplinary workshop on the Two Senses of Smell.

***Please note that the afternoon press launch is by invitation only and tickets are not available to purchase.  However all are welcome to join us for the evening drinks reception, which is taking place at Macmillan Hall, Senate House, London WC1E 7HU, 6-8pm.  To purchase tickets for the evening drinks reception, please visit http://fifthsense.bigcartel.com.  We will look forward to seeing you there.

Here’s to a bright future,

The Fifth Sense team.

Get a Whiff of This – Cambridge Science Centre, 13th November 2013

Fifth Sense will be appearing at Get a Whiff of This at Cambridge Science Centre on the evening of Wednesday 13th November.

Get a Whiff of This will feature an evening of interactive activities exploring the senses of taste and smell, and includes a panel discussion featuring Fifth Sense Founder Duncan Boak, Mr Carl Philpott of the Smell and Taste Clinic at James Paget Hospital and Dr Darren Logan from the Wellcome Trust Sanger Institute.

It’s going to be a really exciting evening which we are delighted to be involved in, and what’s more, entry is completely free.  Click here for more information and to book your place.

Report from Sensation Festival, Chelmsford, 28th September 2013

Chelmsford’s Sensation – Festival of the Senses, organised by Chelmsford City Council, featured a week-long programme of activities exploring how our senses allow us to connect and interact with the world around us.  Fifth Sense had a stand in the busy High Chelmer Shopping Centre on Saturday 28th September, which presented something of a challenge to Fifth Sense Founder Duncan Boak and Fifth Sense members David and Christine Rudge and Barbara Brady  – how to interest busy shoppers in the sense of smell and its loss?

A major part of Fifth Sense’s remit is to help educate people on the role that the sense of smell plays in our lives, and in doing so raise awareness of the issues faced by smell and taste disorder sufferers.  At the Sensation festival we ran two simple activities to demonstrate just how important the sense of smell is to us.

The first of these was a very simple demonstration of how the sense of smell plays a major  role in flavour perception, using jelly beans.  We asked people to close their eyes, take a jelly bean and place it in the mouth and chew whilst holding their nose, and try to guess the flavour.  When we chew food, odourant molecules of it travel into the nose through the back of the mouth and are detected by the nasal receptor cells (this is called ‘retro-nasal olfaction’).  When we eat, therefore, we are actually smelling the food that is in our mouths.  Holding the nose stops the jelly bean molecules from reaching the receptor cells, so whilst the sweetness can be detected (by the tastebuds in the mouth), the bean has no flavour.  As soon as people let go of their nose, midway through chewing, they experience a rush of flavour into the mouth.  This simple demonstration perfectly illustrates just how detrimental the effect of a smell disorder can be on sufferers’ enjoyment of food.

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Omar, a trainee chef whose childhood was spent between the UK and Tobago, takes part in our demonstrations. He interpreted the smell of Johnsons Baby Powder as being of coconut, and said it reminded him of his grandma – an interesting example of how people’s exposure to smells and how they interpret them varies between countries and cultures.

The second activity was designed to demonstrate the link between olfaction and memory.  It has been shown that smell is more closely associated with memory than any of our other senses, something that many people probably know about without ever thinking about it.  To get people thinking about their olfactive memories, we used a number of fragrant substances, chosen because we felt that they were likely to be associated with memories.  We asked people to close their eyes, take a sniff of one of the substances, and rather than try and guess what the smell was, tell us whether it reminded them of anything – memories, places, people, situations.  We chose the strong and unique aromas below in the hope that at the majority of people we spoke to would have experienced at least one of them and therefore have memories associated with them.  We felt that many of them would resonate with both children and adults, albeit for different reasons.

Germoline – cut knees during childhood

Vicks VapoRub – Applied by mum or dad during a cold

Johnsons Baby Powder – baby bathing and changing

Aniseed Sweets – childhood sweetshop aroma

Play Dough – a distinctive childhood aroma

Mixture of cloves and orange peel – Christmas

This activity worked really well, with lots of really interesting memories and connections being evoked amongst the people who participated.  Two of the smells worked particularly well, with the first one being Johnsons Baby Powder, with several people saying it reminded them of their mother or grandmother.  One lady said it took her back to childhood and being given a big hug by her grandma.  The other one was the mixture of cloves and orange peel, which did evoke memories of Christmas in many of the people who tried it.  Interestingly, this seemed to bring about the most detailed responses; one gentleman who tried it said to his wife ‘Oh, it’s like being in Germany when we were there for Christmas – the market we went to with the mulled wine, do you remember the smells there, and the big Christmas tree?’.  Perhaps there is something in this – are people more likely to respond better to more ambiguous mixtures of aromas, rather than very specific individual smells?  Plenty for us to think about before the next event!

The feedback we gained on the day from members of the public was excellent, and we all really felt that we had really helped open people’s eyes (as it were) to just how the sense of smell plays a vital, albeit largely hidden, role in their lives.  We also met a number of anosmia sufferers, several of whom had previously visited their GP and had been told that nothing could be done for them, and were able to pass on information to them on the handful of smell and taste specialists in the UK plus the benefit of our collective experience.

On a final note, we all felt that our participation in the Sensation Festival was a huge success, and paves the way for Fifth Sense being involved in more public engagement activities.  It also demonstrated that Fifth Sense members have a huge opportunity to use their own experiences of living with a smell disorder to educate other people on just how important the sense of smell is to their quality of life, and we will be seeking to create more opportunities for our members to be involved in such activities going forwards.  As Barbara Brady put it:

‘As well as helping to spread the word about Fifth Sense and anosmia, attending the Sensation Festival enabled me to meet and speak to people and get them to understand the impact the condition has on everyday life.

It was so refreshing to share our experiences face-to-face, motivating me to speak more about it and challenge the usual responses we get from non-anosmia sufferers, such as  “it could be worse, it’s not the most important sense”’.

A huge thanks from us to the many people who stopped at the Fifth Sense stand to talk to us, congratulations to Chelmsford City Council on such a successful event, and we’ll look forward to being back next year!

Fifth Sense at Sensation Festival, Chelmsford, 28th September

Fifth Sense is participating in the first ever ‘Sensation – Festival of the Senses’, in Chelmsford on Saturday 28th September 2013.  The festival itself opens on Saturday 21st with a week-long programme of activities that explore the different ways in which we connect with the world around us.

Sensation Wallpaper

Fifth Sense’s Duncan Boak is going to be running a stand from 12:00-18:00 in on Saturday 28th in the High Chelmer Shopping Centre in the city centre where he’ll be talking to the public about the importance of the sense of smell, the issues its loss can cause and the work that Fifth Sense is doing.  In this he will be supported by some Fifth Sense members who have very kindly agreed to join him and talk about their own experiences of living with a smell/taste-related disorder.  The talking will be augmented by some interactive demonstrations to illustrate the power of the sense of smell and some of the ways in which it plays a major role in our lives.

If you are in the area and fancy coming along to join us then you will be very welcome.  We think that this is a brilliant and very forward-thinking event, and full credit to Chelmsford City Council for organising it, so please check out the Sensation website, link below, have a look at the programmes on offer during the festival and come along to get involved, and hopefully we might see some of you on the Saturday!

Sensation Festival Website: http://www.chelmsford.gov.uk/sensation

Facebook: www.facebook.com/sensationchelmsford

Twitter: @CultEventsTeam hashtag: #SensationFestival

High Chelmer Shopping Centre, Chelmsford City Centre, CM1 1XB.  A map of the centre can be found here