We are over-the-moon to announce that our recent funding application has been approved by the National Lottery Community Fund!

Fifth Sense has secured an award of £238,815 to deliver the outcomes contained in our ambitious, fully costed, 3-year Development Plan. The plan was developed by the Fifth Sense board of trustees with support from an external consultant between March 2018 and March 2019.  It featured some significant contributions from members, several of whom provided telling testimonies for the National Lottery decision panel, and was augmented by a number of letters of support from some of the UK’s leading Consultant Ear Nose and Throat (ENT) Surgeons.

To have grown to this point – so soon after the charity’s launch in 2014 – is a remarkable achievement of which we are hugely proud. It’s down to you, too; the voices of our many members and over a million visitors to our website since we re-launched it only three years ago. We were able to draw on a large body of evidence in developing the application including the results of the various surveys we’ve sent to members, feedback you’ve given us at the events we’ve organised and the challenges and hopes you’ve shared with us.  Together, you have helped prove the value and worth of Fifth Sense.

 So, what’s in the Development Plan?  We’re going to be presenting more details of our plans in due course, but here are some highlights.

 Two new salaried appointments – a Development Director and Information Officer – will drive forwards our ambitious agenda, gearing up our operations to benefit a lot more people.

Many of you already know about our Hubs in Newcastle and Scotland. The Hubs bring patients, ENT Consultants – those who specialise in disorders of the nose and sinuses – and GPs closer together for everyone’s benefit. Run by our dedicated volunteers, Julie and Joanne, they have been hugely successful. So now, we plan to extend our reach with three additional Hubs in London, Birmingham and Liverpool!

Professor Claire Hopkins, Consultant ENT Surgeon at Guy’s Hospital in London, is delighted to be partnering with us. She explains; “Fifth Sense is an invaluable resource. It provides important information on the different causes, practical instructions for smell training, advice on safety issues, and directs patients to active trials. I direct all my patients to Fifth Sense at the end of my consultation.”

Those who run the new Hubs will follow in Julie and Joanne’s footsteps. They’ll co-ordinate events at which clinicians hear patients’ stories to highlight the impact our conditions have on daily life. They’ll arrange informal member gatherings, allowing people to share stories and offer support to each other. They may also run Fifth Sense stands at events, including those aimed at the wider public, such as food festivals or science events.

Mr Sean Carrie, Consultant ENT Surgeon at Newcastle Freeman Hospital , shares his own Hub experiences;  “I have been fortunate enough to work with Fifth Sense on a number of patient information exchange days. This has enabled patients and clinicians to share good practice, challenges and frustrations with one another. This cooperative working is leading to avenues of research to improve understanding and treatments in the future. This would not have been possible without Fifth Sense.”

On a national level, Fifth Sense will be  upping its game with  social media and PR activities to better address the lack of understanding that persists within the medical profession and general public. So, watch out for us  popping up in the news!

Fifth Sense founder and Chair, Duncan Boak, provides a personal message in this video.

Needless to say, our new people, new resources and new partnerships will take several months to put in place, and the activities we’ve outlined will develop over the three funded years – this a major transition and we’re determined to get everything right. Of course, we’ll soon be in touch with those who have already expressed an interest in becoming volunteers at the Local Hubs. And we’ll make sure we keep everyone posted on our progress, as we gear up for what is set to be an exciting future.

Our thanks to the National Lottery Community Fund – the largest funder of community activity in the UK – for their recognition of the work we are doing. Thanks too must go to all those who made this funding possible: players of the National Lottery itself.  Finally, we’d like to thank everyone who has supported us and made a donation – whether money, time, or expertise – to help us reach this point. This is a fantastic example of what can be achieved when a community of people with a shared purpose works together, and we’re looking forward to being able to do even more over the next three years.

Fifth Sense recently heard about an interesting research project that investigated the role our tongues play in taste perception.

Scientists from the Monell Chemical Senses Center in Philadelphia report that functional olfactory receptors – the sensors that detect odours in the nose – are also present in taste cells found on the human tongue. By studying cultures of these taste cells, the scientists discovered that they responded to odour molecules in a manner similar to olfactory receptors in the nose.

With regards to eating, it has long been known that the brain processes information received independently from the tongue (taste) and retro-nasally via the nose (smell). In combination, this information contributes to our assessment of the food in our mouths – including what we know as flavour. Monell’s research suggests that something more may be going on, that interactions between the senses of smell and taste are also happening on the tongue.

Fifth Sense member and Communications Advisor, Max Law, was keen to learn more. What exactly do these findings mean?  Might Fifth Sense members be the beneficiaries of this and future research into the tongue? Max caught up with the leading scientist on the Monell team, Dr Mehmet Hakan Ozdener, to find out.

Max Law: The majority of our members lack a properly functioning sense of smell which of course impacts their ability to enjoy flavour in food. What words of encouragement can you offer them with regard to your findings? 

Dr Ozdener: My data demonstrate that olfactory receptors are present in taste cells. However, I do not know how these olfactory receptors are wired to the brain. Olfactory receptors are located on taste cells and when taste cells are stimulated, they activate areas of the brain that give us the sensations of taste: i.e. bitter, sour, sweet, savoury and salty. So, I believe that olfactory receptors in taste cells may have a modulatory role on taste perception in the mouth. That is, odour molecules may enhance/reduce/eliminate certain tastes of food. For example, it is well known that the odour of vanilla can enhance the sweetness of a food or beverage. 

Max Law: It would be wonderful if Fifth Sense members might one day be pointed towards foods or drinks known to be richest in the molecules that activate odour receptors on the tongue. Might it be possible for research to identify such molecules and if so, are there any plans to do so?

Dr Ozdener: My work on the function of olfactory receptors located in taste cells is new and ongoing. There are many challenging questions to address, including the ones you raise. At this time, we understand very little about which odours stimulate the olfactory receptors on the tongue and how these ‘tongue odours’ may affect our sensory perception and enjoyment of food.

Max Law: We often hear from members concerned about the impact their anosmia is having on dietary choices. A fair number seem to gravitate towards foods high in sugar and salt. It’s only anecdotal, yet one wonders if such people are at higher risk than the general population. With this in mind, might they one day be able to satisfy their cravings in other, healthier ways?  

Dr Ozdener: As you and the members of Fifth Sense are well aware, the odour of foods is very important to overall food perception and acceptance. Food odour and taste combine to produce food flavours. There is much interaction between taste and smell. We know that certain odours can enhance the perceived sweetness and saltiness of foods and reduce perceived bitterness. Without the sensory enhancement of taste from food odours, it may be the case that anosmics are more inclined to choose foods higher in salt and sugar. However, it is too early to predict whether we will be able to harness information from odours detected by the tongue to redirect flavour perception or preferences.

Max Law: We were fascinated to learn that your study was based on human taste cells grown in cultured environments. Fifth Sense partners with an organisation called FlavorActiV, the world leader in the training and monitoring of professional tasting panels. We are presently working with FlavorActiv on a taste training project aimed at helping people affected by olfactory loss make the best use of any remaining sense of taste. It prompts us to wonder whether there any plans, or is there any value, in using human subjects in future, tongue-related research? Could people with anosmia be helpful in this regard? Our experience suggests that many of us with no noses are very in tune with our tongues!

Dr Ozdener: It certainly is of interest to contrast the olfactory function of taste receptors on the tongue in anosmic vs. non-anosmic populations. One might expect that the olfactory receptors on the tongue would function normally in anosmics who lost their sense of smell from conditions affecting the nasal cavity, for example from a viral infection. On the other hand, it may be that those who were born without a sense of smell may also not have functional olfactory receptors on the tongue. We simply don’t know the answers to these questions at this time.

So, what are we to make of all this?

With an impaired sense of smell, we’ve learnt to treasure our tongues as the gateway to what we have left. We’re never going to smell by sticking out our tongues, but it’s encouraging that they appear to be doing more than we knew.

Odours we pick up from our tongues seem to affect how we perceive the likes of saltiness, sweetness etc. This could be why some of us can still differentiate between certain foods or drinks, even when flavour is absent. For example, why some can evaluate the different ‘bitternesses’ of coffee or real ale.

Yet the senses of smell and taste operate in highly complex and multi-variate ways. Their precise workings are hard to pin down. Fifth Sense trustee and ENT consultant, Professor Carl Philpott summed it up:

“At this stage it’s too early to draw any significant conclusions from this research. We don’t know how olfactory receptors work on the tongue, and although the research does suggest a possible mechanism, we would need a further study to prove this.”

By revealing new things about smell and taste, Dr Ozdener’s work shows how much there is that we still don’t know. Nevertheless, Monell and Dr Ozdener should be applauded for a project that signposts where the world of science might look next for answers. Fifth Sense will follow such developments with interest.

Julie Wilson and James Martin from Fifth Sense, Scotland, attended the British Rhinological Society Conference on the 17th May, at Glasgow’s Science Centre. The conference revealed encouraging signs regarding Fifth Sense’s growing influence within the healthcare community.

Julie Wilson and James Martin

The Fifth Sense stand was in the general exhibition area, and a well-attended conference meant that they were busy when lunchtime came. A number of healthcare professionals asked to be signed up for the Fifth Sense newsletter. Many said they were very pleased that Fifth Sense is such a strong presence now, as they signpost patients to the website and have gained lots of useful information themselves.

There was talk too about the prospects for member contact in two regions: one for a local support group to be set up, the other for Fifth Sense members to agree to present their experiences of anosmia and/or taste disorders at local health professional training days. Needless to say, these expressions of interest were carefully noted by James and Julie and will be subject to further discussion in the days and weeks ahead.

The Newcastle Hub held their latest ‘meet up’ on Saturday 11th May at the Town Wall pub in Newcastle.  A big thank you to Helen and Tom who kindly volunteered to host the get together and welcomed two new members to the group.

The group of six enjoyed talking to each other about their experiences and it was fantastic to hear that they were very interested in being pro-active to raise awareness. For example, they discussed how Fifth Sense flyers could be put on noticeboards or on tables at regional hospitals etc. If anyone else has ideas or suggestions, Joanne would love to hear from you.

The Hubs provide a great opportunity to make a difference, so if you’re interested in becoming a volunteer ‘Local Pioneer’ for the Newcastle Hub do please get in touch. This could mean simply hosting one of our local ‘meet ups’ or being actively involved with local hospitals. Members will recall that Fifth Sense recently put out a ‘Call for Volunteers’ in connection with our funding application. As part of this call out, we created a pdf with examples of what we do in our Hubs. So if you’d like to learn more about our Hub work, this is the place to find it:

Download the Local Pioneer FAQ sheet

Wherever you are in the country, perhaps you’d like to take your own Fifth Sense flyer to your next GP or Consultant appointment? You can download a copy here:

Download the Fifth Sense Flyer

Joanne hopes that the next ‘meet up’ will be in August. She is happy to take suggestions from members on dates and venues so please feel free to let her know if you have any preferences.  It is however important to be close to good transport links as many of our members travel by train.

You can contact Joanne at Newcastle@fifthsense.org.uk.

We are delighted to announce that Fifth Sense 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.

Fifth Sense 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.

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.

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.