First get-together for Fifth Sense’s North-East Hub

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 http://www.fifthsense.org.uk/north-east/

 

Fifth Sense talk smell and taste at BACO 2015

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.

photo 2-3We’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.

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. 

 

Chrissi Kelly at A Slice of Sensory

‘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.

photo-23Chrissi 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

 

 

Regional Hub Activities April/May 2015

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)

unnamed-3Volunteer 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.

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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

 

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 at How to Improve Your Sense of Smell with the Perfume Society

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.

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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

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Our Report on Anosmia Awareness Day 2015

27th February was Anosmia Awareness Day, and this year we highlighted it by running an awareness-raising campaign entitled ‘Long Lost Smell’. The campaign sought to highlight the evocative connection between smell and memory alongside the impact of smell loss.

LongLostSmellWe asked people with a sense of smell to think what it might be like to have it taken away from them, and tell us which smell they would miss the most, sharing this on twitter and Facebook using hashtag #LongLostSmell. We also asked people affected by olfactory disorders which smell they miss more than any other, or the one thing they wish they could smell. This is part of our ongoing efforts to get people talking about the sense of smell.

We’ve shared the responses on our Storify page at http://www.storify.com/fifthsenseuk/long-lost-smell and the results make for fascinating reading. We received tweets from Fifth Sense members and also many from people involved in the worlds of food, wine and fragrance. A number of fragrance organisations and writers also got involved and featured articles on their websites.

JarsOn 27th February itself, Fifth Sense’s Duncan Boak and Chrissi Kelly attended the Body and City symposium organised by urban sociologist Dr Alex Rhys-Taylor. Duncan gave a talk on how the sense of smell forms an important connection to our environment, particularly in terms of our memory. Chrissi had brought along some jars of Long Lost Smells that she asked guests to sniff and try to recognise…boot polish was recognisable to most people, but those under 30 struggled to recognise the moth balls!

We also asked people who participated in the #LongLostSmell campaign to make a donation which will go towards starting a dedicated fund to support future research into smell and taste disorders. We’d like to take the opportunity to thank everyone who made a donation.

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Fifth Sense Member Claire Mulligan and her colleagues at Oakwood Day Service in Nuneaton (pictured left) have been wearing noseclips and red on Anosmia Awareness Day for the past few years.  Claire told us: ‘Knowing there is a charity out there that supports people with similar conditions and are striving to develop more awareness and research around this is fantastic and reassuring, it gives people the opportunity to share their stories and frustrations and feel more accepted.’

unnamed-2Following on from Anosmia Awareness Day itself, Fifth Sense’s Chrissi Kelly (third from right in the photo) appeared on BBC Radio 4’s Saturday Breakfast on 14th March, talking about her experience of losing her sense of smell. Chrissi also talked about the work she is doing around smell training, which she believes is responsible for restoring some of her olfactory ability. Chrissi’s appearance clearly struck a chord with listeners; we’ve had emails from people asking about smell training and telling us it was the first time they’d heard there is a name for their condition.

Over in the US, the Monell Chemical Senses Center were also running some activities as part of Anosmia Awareness Day, including running a seminar on the causes and treatments for anosmia to physicians in the Philadelphia Area. For more information on their activities visit their website using the link below.

We’d like to say a huge thanks to the following people and organisations for their support of Anosmia Awareness Day and Fifth Sense:

FlavorActiV Logo Spot Colour

FlavorActiV
http://www.flavoractiv.com/2015/02/longlostsmell-anosmia-sensory/

FlavorActiV is the world’s only provider of pharmaceutical quality produced and controlled flavourstandards for use in beer, wine, cider, carbonated soft drinks, waters and many other beverages to help train professional sensory panels.

PERFUME_SOCIETY_LOGO_FINALThe Perfume Society 
http://perfumesociety.org
The Perfume Society produced a special report on our
#LongLostSmell activity which first appeared in their newsletter, The Scented Letter. This appears eight times a year online as a VIP Subscriber benefit to those who belong to The Perfume Society.

Click here to view The Perfume Society’s #LongLostSmell article

Basenotes
An independent online guide to perfume.
http://www.basenotes.net

Get Lippie
Get Lippie, aka Louise Woollam, is a perfume and beauty blogger and Fifth Sense member who has written extensively about her experience of developing anosmia and parosmia.
http://getlippie.blogspot.co.uk

Dr Alex Rhys-Taylor at Goldsmiths College
Alex Rhys-Taylor is a sociologist with a specialism in urban sociology, not to mention a great interest in the sense of smell.
http://www.gold.ac.uk/sociology/staff/rhys-taylor/

MCS-logoMonell Chemical Senses Center
The Monell Center is the world’s only independent, non-profit scientific institute dedicated to interdisciplinary basic research on the senses of taste and smell.
http://www.monell.org/news/monell_notices/anosmia_awareness_day_2015

Elena Vosnaki at The Perfume Shrine
An award-winning independent online publication focusing on perfumery.
http://perfumeshrine.blogspot.co.uk/2015/03/the-case-for-anosmia.html

Volatile Fiction
The fragrance blog of Finnish perfumer Pia Long.
https://volatilefiction.wordpress.com/2015/02/17/long-lost-smell/

And a special thanks to Daniel Schein who first started Anosmia Awareness Day and without whom, of course, none of this would have happened.  Visit the Facebook page he runs at https://www.facebook.com/AnosmiaAwarenessDay