Lisha McClelland presents, with session Chair Sean Carrie

On Friday 26th May over 120 Fifth Sense members, their partners and family members came together with medical professionals at an event at the Royal Society of Medicine (RSM)  in London.  Living Without Smell and Taste was part of the RSM’s Medicine and Me series, which provides patients and their families with an opportunity to gain insight from the medical profession and relevant patient bodies around a medical condition which affects them.

The event was proposed by RSM Dean Emeritus John Scadding after  Consultant ENT Surgeon and Fifth Sense trustee Mr Carl Philpott deliver a lecture at the RSM in November 2016.  Mr Philpott and fellow trustee Duncan Boak met with John and RSM colleagues and co-designed a programme that incorporated Fifth Sense members talking about their experiences of living with a smell/taste disorder alongside a number of ENT Consultants who explained what is known about these conditions and challenges involved in treating them.

Fragrance writer Louise Woollam opened proceedings by talking movingly about her experience of losing her sense of smell as the result of a virus, a situation that became much worse after she then began to experience severe parosmia.  ENT Consultant Miss Lisha McClelland of the smell and taste clinic at Birmingham’s Queen Elizabeth Hospital then spoke about post-viral olfactory loss, phantosmia and parosmia.

Claire Hopkins talks about the importance of self-management

Alahree McDonell then spoke about how she has been affected by Chronic Rhinosinusitis for many years, and the various dietary changes she has made as part of efforts to self-manage her condition, which was improved by a visit to the rhinology clinic at Guy’s Hospital in London, run by Miss Claire Hopkins.  Claire herself followed Alahree and spoke about various ways in which CRS can be treated and managed, as well as the MACRO project that aims to improve the way this condition is managed across the NHS.

After a break, Ian Rickson spoke about losing his sense of smell following a head injury, and how this experience has affected his life in different ways.  Iordanis Konstantinidis, an ENT Surgeon who runs a smell and taste clinic in Greece, followed Ian by explaining how olfactory loss can be caused by head trauma.  Iordanis also spoke about the work he is doing to try to encourage early referrals from A&E to his clinic so patients can be investigated sooner for olfactory impairment.

BBC R4 presenter Kathy Clugston then gave a very engaging talk about having never had a sense of smell, mentioning her dad’s favourite joke: My daughter’s got no nose (we’ll refrain from including the ‘punchline’).  John Scadding and Duncan Boak then summed up proceedings and thanked the speakers for their contributions to what was a really informative, rewarding and, at times, emotional experience.

Kathy Clugston with the RSM’s John Scadding

It is the first time that such a high-profile UK medical organisation has hosted an event on smell and taste disorders, and the support of the RSM is something that will help us in our goals around engaging with and educating the medical profession on these conditions.  Mr Sean Carrie, who runs a rhinology clinic at Freeman Hospital in Newcastle, made a great point when he talked about the partnership between Fifth Sense and the clinicians with whom we have links being a means through which we can educate other healthcare professionals.  We look forward to developing our relationship with the RSM and we’d like to thank them for their support of our cause.

If you’re affected by a smell/taste disorder and would like to seek a referral to one of the clinicians mentioned in the article then visit the ‘Clinics’ page of our website for more information.

Louise Woollam writes a blog called the Parosmia Diaries which is a valuable resource for anyone affected by this condition.

27^th 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.

We 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.

On 27^th 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.

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.’

Following 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
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.

The 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/

Monell 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