SmellTaste is launching a survey to capture patients’ experiences of navigating the healthcare system.   We know that so many of you face real challenges in getting support, advice or treatment from your doctors, although there are success stories too.  The survey has been designed to capture data that will highlight both these challenges and successes as part of our ongoing efforts to improve awareness amongst the medical profession and improve patient experience.

We believe that this is the first piece of research to focus specifically on this issue and we’re very proud to be part of a multidisciplinary project team.

Supported by a grant from Newcastle Medical School, SmellTaste have partnered with Mr Sean Carrie and Stephen Ball from Newcastle Freeman Hospital and Newcastle University and Olfactory Mapmaker Kate McLean and her colleague Rachel Hancock. An event in Newcastle in November 2018 brought together SmellTaste and Voice North members to share experiences and help with the design of the survey.  Kate and Rachel made drawings that captured the issues discussed and asked guests to complete ‘smell wheels’ to visually represent their own smell experiences.

The results of the survey will be used to:

– Inform SmellTaste’s ongoing efforts to raise awareness of smell and taste disorders amongst the medical profession and the need for widespread education/training for healthcare professionals
– Help us develop information aimed at both patients and healthcare professionals to help ensure that patients have the best possible experience when seeking medical advice
– Help future efforts to improve the patient journey through the healthcare system for people with a smell/taste disorder
– Provide data to support applications future research studies and projects
– Kate and Rachel are designing a poster to accompany the results which will visually represent some of the challenges faced by patients
– The results will be published in an appropriate medical journal and on the SmellTaste website

The survey is completely anonymous and should take no longer than 10-15 minutes to complete. It is based on the UK healthcare system but it should still be relevant if you are based in another country. We would like contributions from people outside the UK as this data may help to show that this is a global issue. We’d also like to hear from parents of a child with a smell/taste disorder who have sought medical advice as it’s important that your voices are heard too.

Click here to complete the survey

The deadline for completing the survey is 1st April 2019

We very much value your input and thank you in advance for your time in completing this survey.  We will share the results on our website in due course.

In 2018 we worked with Anna Seecharan, MA Anthropology of Food student at SOAS, University of London, who decided to tackle the impact of olfactory impairment on the enjoyment of food and drink for her dissertation.  Anna  has completed her work and was awarded the School Prize for Best Dissertation!  Fantastic news, we’re sure you’ll agree.  Anna has very kindly produced a summary of her work to share with SmellTaste and the people we represent.

Dear SmellTaste members,

Last summer, 2018, I sent out an invitation to participate in my research via the SmellTaste mailing list. I was truly astounded by the number of replies I received. This overwhelming response highlighted the extent to which anosmia is an “invisible” condition – not only is it literally unseen, it is also not commonly known about, poorly understood, and there is a significant lack in public resources to support those living with smell disorders. Furthermore, the huge response I received demonstrated a widespread desire for members to be able to talk about their anosmia, often for the first time, with others.

I would like to express my gratitude to all who replied, and especially to those who shared their personal experiences so generously with me. I would also like to thank Professor Carl Philpott and Duncan Boak for their support of the project. I hope that I have been able to do justice to your many and varied contributions.

What follows is an overview of the research I submitted for my MA dissertation in the Anthropology of Food at SOAS, University of London, entitled: “When flavour is only a memory: The impact of Anosmia on Food, Identity and Belonging.”

If you would like to read the full version, please let me know – I would be happy to share it. (email: anna.seech@gmail.com)

With my very best wishes,

Anna Seecharan

Why this research is important:
A high proportion of participants in this study reported difficulty in receiving advice or help with anosmia from GPs and other health professionals. The fact that anosmia is not currently highly prioritised by public health services, and the reasons for this, require further investigation. However, it was extremely troubling to hear how many participants felt that medical professionals were dismissive of their concerns or trivialised their condition. For many (even globally), SmellTastewas their only source of information on anosmia. The relative ‘invisibility’ of this condition – in both the health service and wider public arena – reflects a lack of information about and understanding of anosmia, resulting in insufficient resources to support people with living with a smell disorder.

This study attempts to give voice to the multiple ways in which smell disorders are experienced by anosmics in their daily lives. It addresses the physiological reasons why the senses of smell and taste are highly subjective and, rather than attempting to measure these objectively, takes an ethnographic approach which allows patients to articulate their own personal experiences. By identifying the role sense of smell plays in shaping our sense of self and our social relationships, this research begins to shed light on the often-devastating impact that the loss of sense of smell can have not only on physical health but also on mental well-being.

This research takes up the task of gathering information on how anosmics – in their own words – experience living with smell disorders on a daily basis.Collecting data for further research and analysis of anosmia will help to inform our understanding of why anosmia is ‘invisible.’ Providing space for participants to share their difficulties and discuss common challenges can help to identify coping mechanisms and strategies which can be shared more widely, as well as enabling anosmics to find new ways to talk about their condition and talk about it with others. Research is also valuable in highlighting areas in which further support and resources are needed.

Research findings:
While I talk about ‘anosmia’ in general terms to indicate a lack or loss of the ability to smell, it is important to emphasise that different types of smell disorders are experienced in very different ways. The most frequent causeof anosmia is viral and/or traumatic and, for the majority of participants in this study, the most difficult challenge was the shock of being suddenly deprived of access to a world of smells which they had hitherto been able to participate in. However, not all participants experienced anosmia as negative or traumatic – most notably those with hyposmia, for whom sense of smell had reduced gradually over a long period of time. For congenital anosmics, navigating a world of aromas without a concept of what smells arepresents different, but equally difficult challenges.

This research focusses on the impact of anosmia on experiences of food and eating. The theoretical approach I used (called ‘olfactory ethnography’) takes into consideration the sensory perceptions of the body, such as smells, tastes, textures and sensations, in order to analyse anosmics’ daily lived experiences in three key domains: the body (physiological), the individual (psychological), and the group (social).

The way in which the brain simultaneously processes the aromas and tastes of food molecules means that sense of smell plays a crucial role in our appreciation of ‘flavour’. While there are other ways to find pleasure in food (e.g. texture or ‘taste’ sensations), without the ability to smell aromas, participants reported a dramatic reduction in their ability to experience flavours. In the case of parosmia (distorted aromas) or cacosmia (bad smells), eating can be an extremely unpleasant experience. Being able to remember and recognise ‘good’ flavours is perhaps the biggest contributor to our enjoyment of food, therefore not being able to fully enjoy favourite foods has significant consequences for appetite (such as not wanting – or simply forgetting – to eat) and satiation (for example, not feeling satisfied by food or knowing when to stop eating).

In addition to how we physically ‘taste’ the flavours of foods, memory-making processes are crucial in explaining why food can be so emotionally meaningful and how group belonging can be created and maintained through eating together. For anosmics, the implications of losing access to these memory-making processes can be profound, and many described lacking or losing their sense of smell as a deeply traumatic experience. Furthermore, because sense of smell is highly subjective, it can be extremely difficult to verbalise – we do not have any language in English to talk about smells. Many of the participants in this study reported feeling excluded or isolated by thedouble loss – firstly of their sense of smell, but also the ability to communicate this loss with loved ones.

Further research:
The considerable response to my call for participants (99 replies within a week) strongly shaped the way in which I carried out this research. My analysis was based on 31 written responses, 14 in-depth interviews, and one week of ‘auto-ethnography’ (in which I blocked my own sense of smell while cooking or eating). The stories I heard were so powerful that I felt a responsibility, first and foremost, to give voice to this ‘invisible’ condition and to convey the richness of the ethnographic data. This led me to take a ‘bottom-up’ (data-driven) analysis.

This paper was necessarily space-limited, however I identified multiple potential avenues for future research, including:

·     Further investigation of other problematic issues raised by participants, such as: medical concerns; safety concerns; health, nutrition and dietary concerns; personal hygiene; non-food related social concerns, and intimate relationships in particular.
·     Deeper analysis of the differences between different types of anosmia, for example, congenital anosmia (where the patient has never had any concept of what a smell is) raises very different concerns to the experience of viral/traumatic anosmia (in which the sense is lost);
·     A ‘top-down’ theory-driven analysis would be complementary to, and further illuminate, my data-driven approach;
·     An exploration of anosmia using alternative methodological approaches, such as ‘sensory ethnography.’

I am delighted to have been awarded the School Prize for Best Dissertation, 2017-18 for this paper, and this may provide a firm basis for funding applications and enable me to carry out further research on anosmia in future.

Dear SmellTaste members

In recent months SmellTaste has been busy pitching an ambitious three-year development plan to a major funding organisation. If we succeed with our application it will secure significant new monies. It will up our game as never before. We are on the brink, having made it through to the last stage. But we need one final push. Can you help?

I’m calling on SmellTaste members to consider volunteering roles for three Local Hubs we wish to establish in the first year of the plan. This is an opportunity to be part of a bigger, better and more vocal SmellTaste.

We don’t need binding commitments at this stage, merely expressions of interest. You’ll want to ask questions of us and we’ll want to learn more about you. It’s about matching your skills and experience to the different tasks ahead. Yet a volunteer network is central to the plans we have presented. Our application has a greater chance of success if we can show the extent to which members are willing and able to offer their support. We are calling for volunteers in London, Birmingham and Liverpool.

So, what does the volunteering role entail?

Requiring a couple of hours per week on average, your efforts will support one of three Local Hubs (London, Birmingham or Liverpool) where SmellTaste will set up partnerships with Consultant Rhinologists (ENT professionals specialising in disorders of the nose and sinuses). Having grappled with your own smell and taste disorders, you’ll help others by sharing your experiences. You’ll co-ordinate events at which clinicians hear patients’ stories to appreciate the impact our conditions have on daily life. You’ll help set up informal patient support groups. Some people may benefit from specific taste and smell training sessions. Via the Rhinology partnerships you’ll be able to engage local GP practices. This is an important part of our work. Many GPs lack sufficient understanding of smell and taste disorders and patients are poorly served as a result. There may also be opportunities to co-ordinate engagement activities among the wider public, for example at existing science or food events. These things and more form a model pioneered by SmellTaste at the organisation’s inception back in 2012. We know the model inside out. We’ll provide training, support and pay your out-of-pocket expenses. We presently have volunteer Local Pioneers Julie and Joanne representing us in Newcastle and Scotland. You can read about how they’ve benefited from volunteering for SmellTaste here. Email us at volunteering@fifthsense.org.uk with any questions.

Volunteers are valued members of our team. They help shape and improve everything we do. With this in mind you’ll be invited to our annual volunteers’ forum to share your successes and meet our trustees.

So, what will these new funds mean for SmellTaste?

We’ll be gearing up our operations to benefit a lot more people. Two new salaried appointments – a National Director and Information Officer – will drive our ambitious Development Plan. We’ll be upping our social media and PR activities to better address the lack of understanding that persists within the medical profession and general public. Our national activities will sit hand-in-glove with the efforts of those in the Hubs, where you – the volunteers – will bring direct, hands-on help and support to those who need it most.   Watch out for more and different volunteering roles which we’ll announce if we’re successful with our application.

Unlike speech, hearing or visual impairment, smell and taste disorders are invisible, and all the more insidious for it. Perhaps you’ve had experience of a doctor focused only on the clinical, dismissing your smell loss as a trifling problem you’ll just have to live with? Do you get frustrated when friends forget your condition and you’re obliged to explain, yet again, that you simply can’t comment on the restaurant’s food in the way they’d wish? Many of us feel misunderstood by our problem. For some, volunteering – just by getting out there – is a way of overcoming feelings of isolation.

Winning this funding application will transform SmellTaste and the lives of those it supports. Our Development Plan is greater than one letter can share. I assure you that if you do volunteer, you’ll be joining the team at a very exciting time.

Sincerely,

Duncan Boak

Founder and Chair

Please email volunteering@fifthsense.org.uk with your expression of interest.  Please let us know where you’re based and feel free to ask any questions.  Please bear in mind that our funding application is still in progress, but showing that we have potential volunteers ready to get involved will help support our application. If we do win the application then activity won’t start straightaway, but we will make sure we keep you informed on progress.  We’ll look forward to hearing from you.

Interested in learning more about the science and philosophy of the sense of the smell?   The Centre for the Study of the Senses (Censes) at the Institute of Philosophy are running a series of seminars in 2019, each one given by an expert guest speaker.

Each seminar will be held in Senate House at the University of London, Bloomsbury.  The series is part of the AHRC Science in Culture Theme, which aims to encourage mutual exchange between researchers working across the Sciences and the Arts and Humanities.

Prof. Barry Smith, Censes Director, says that the seminars are a great opportunity to get a better understanding of the importance of the sense of smell: ‘We have assembled some of the world’s leading experts on olfaction to talk about the latest science and philosophical thinking about our sense of smell, its mysterious working and its place in our lives. The seminars are open to everyone and all are welcome.’ 

The seminar programme can be downloaded here

For more information visit the Institute of Philosophy website.

We’d like to say a big thanks to Prof Smith and Censes for the support they continue to give SmellTaste and our cause, which started when they hosted our press launch at Senate House in 2014.  Looking forward to working together to educate

Registration is now open for SmellTaste2019, the bi-annual event at the University of Florida, Gainesville, FL, for people affected by smell and taste disorders.  The event is being delivered by the University of Florida Center for Smell and Taste (UFCST) and SmellTaste, the UK-based charity for people affected by smell and taste disorders.

The goal of SmellTaste2019 is to empower those experiencing a smell or taste impairment through education, support and engagement. This patient-focused conference provides an opportunity for anyone affected by a smell or taste disorder to learn more about their condition, to engage with clinicians and scientists pursuing treatments for these disorders, and to interact with others affected  are experiencing smell or taste impairments. SmellTaste2019 follows the successful SmellTaste2017, which brought people to the University of Florida from around the world.

Register online at http://www.smelltaste.org. Registration includes the full meeting program, meeting materials, a catered luncheon on Saturday and a banquet on Saturday evening. Guest tickets for the banquet can be purchased separately.

We’ll be publishing further updates and information on the SmellTaste and SmellTaste2019 website in due course.  We hope you’ll be able to join us and look forward to seeing you there!

Duncan Boak, left, with fellow SmellTaste trustee Prof Carl Philpott

Duncan Boak, founder of SmellTaste and Chair of our board of trustees, has been interviewed for Episode 18 of the Smell Podcast.  In the interview Duncan talks about his own experience of losing his sense of smell and how this led him to establish SmellTaste after being introduced to ENT Consultant Prof Carl Philpott.   He also talks about the work of the charity and the events we run, including SmellTaste2019 and our UK Members Conference later in the year, and the important role played by our volunteers, the majority of whom are themselves affected by a smell or taste disorder.  Duncan also outlines the work that SmellTaste is doing with our partners FlavorActiV to develop a taste training kit and guide to help people with olfactory loss get more enjoyment from eating and drinking.

Duncan was interviewed by Katie Price, who runs the Smell Podcast.

You can listen to episode 18 with Duncan’s interview here on iTunes.

A very Happy New Year from all of us at SmellTaste!  We’ve got a lot planned for 2019, here are some of the highlights. If you’d like to be kept informed then please join our community to receive regular news updates.  All the very best for the year ahead.

Launching a survey to capture patients’ experiences of navigating the healthcare system

We know that many people affected by a smell or taste disorder face real challenges in getting support, advice or treatment from their doctors.  The data captured by this survey will provide valuable evidence to support our work in improving awareness and understanding amongst the medical profession.  Look out for further details in due course.

Delivering events that provide patients with information from experts, support and advice on how to better cope with a smell or taste disorder

On 17-19th May we’re co-delivering SmellTaste2019 in Gainesville, Florida, in partnership with the University of Florida Center for Smell and Taste.  SmellTaste2019 is the major US educational/support event aimed at people with smell and taste impairments.  Visit www.smelltaste.org for further details. 

We’ll be following this in autumn with our UK Members Conference which we’ve been running since 2013 and on which the format of the SmellTaste event is based. We’re giving our members a say in where we hold this year’s event, with Birmingham, Leeds and Newcastle the potential locations we’ve selected.  You can cast your vote here.

Providing support and advice for people by releasing more of our ‘Top Tips for Living with a Smell or Taste Disorder’ leaflets

Our Top Tips sheets are based on advice provided by SmellTaste members based on their own experience of living with a smell or taste disorder.  You can download them here. We’ll be making more leaflets available to download over the coming months.

Continue developing a Taste Training kit and guide with our partners FlavorActiV to help people affected by olfactory loss get more enjoyment from food and drink.

A group of SmellTaste member volunteers will start testing the latest version of the Taste Training Kit early in 2019.  We’ll look forward to sharing more information with you very soon!

Continue providing opportunities for our members to meet up, make new friends and get mutual support 

We currently have two support groups established, one in Newcastle upon Tyne, the other in Scotland, run by our fantastic volunteers Joanne and Julie.  These hold regular get-togethers and social events.  SmellTaste member Dan Kunkle is also planning on holding his annual lunchtime ‘Anosmic Smorgasbord’ in Cambridge in May/June.  Look out for further details!

Engaging directly with healthcare professionals to improve awareness and understanding

We’re planning on having a stand at the 2019 British Rhinologic Society meeting in Glasgow. These events are attended by Ear Nose and Throat doctors who specialise in diseases of the nose and sinuses.  It’s a great opportunity to raise awareness  of the impact that smell and taste disorders have on patients and the work that SmellTaste is doing to help those affected. disorders.

It’s that time of year again, and here are a few suggestions to add some bite and flavour to your Christmas holiday eating and drinking!

Let’s be honest, it’s easy to feel a little downhearted as we approach this most festive time and I’m sure many of us can experience a moment or two of despair as we contemplate another smell or taste-free Christmas. Here, the message is to stay positive and keep searching for the things that can tickle your taste buds, however bizarre they might seem to others. As SmellTaste member Jan suggests, try “eating with your brain” – approach your food and drink with an open mind and use the memory of the taste/smell if you possibly can. Be aware of textures and trigeminal responses to things such as menthol – and alcohol…! Stay peaceful and enjoy what you can, when you can.
Wishing you all a pleasant and tasty Christmas time and a very Happy New Year.

Download our 2018 Christmas Food Tips Here (PDF)

Download a Word document version here

On Saturday 24th November SmellTaste members came together with clinicians from Newcastle Hospitals/Newcastle University, olfactory mapmaker Kate Mclean, her colleague Rachel Hancock and Voice North members at the Great North Museum in Newcastle to discuss the challenges that many patients with smell and taste disorders face in getting medical advice and treatment.

The day was an informal forum to provide feedback on a survey that will be sent out to all SmellTaste members to gather data on this topic. The event started with a presentation from Steve Ball, Newcastle University, and Duncan Boak, SmellTaste Founder and Chair, who gave an overview of the day and explained the structure of the survey objectives. This was followed by Duncan and SmellTaste volunteer Joanne Dixon who spoke about their own personal experiences and the challenges they had faced getting information, diagnosis and treatment from doctors.

Audience members then broke into groups to talk about their own experiences and make some much-valued suggestions around design of the survey. 

Following lunch Sean Carrie, ENT Consultant at the Freeman, spoke on smell and taste disorders from the view of medical professionals. He talked about the most common causes, including sinus problems such as polyps and chronic rhinosinusitis, viral infections and head injuries whilst drawing on the challenges also faced by clinicians.

Steve and Duncan then ran through the questions on the survey which generated some fantastic discussion and gave the team a number of ideas and ways in which to drive the design of the survey forward. This will ultimately result in a valuable piece of research that we can use as part of our ongoing efforts to highlight the need for improved medical services for people affected by smell and taste disorders.

We were very privileged to welcome sensory map maker Kate McLean and her colleague Rachel Hancock who created a visual interpretation of the event. Towards the end of the day Kate and Rachel presented audience members with a  blank smell wheel and handed out paint pots and coloured pencils. Everyone happily joined in and created their own interpretation of their smell today and how they would like their smell to be in the future.

A great deal of useful feedback was provided by audience members at the event and this will be incorporated into the survey which we hope to share with SmellTaste members via email in early 2019.   The artistic work and visual representations provided by Kate and Rachel were very powerful. As Steve said “It is certainly much more impactful than numbers and text alone.”

We’d like to say a huge thank you to all the SmellTaste and Voice North members who participated in the event, Kate and Rachel for their fantastic contributions, Steve Ball, Sean Carrie and also to the Great North Museum for hosting us.