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Category: Latest News

Latest News
26 April 2023

Natural History Museum’s ‘Lates: Sensations’ free event

Join us at the Natural History Museum for a ‘Lates: Sensations’ free event on 5th May between 18.30-22.00, where SmellTaste are a guest of British Society of Perfumers.

The event explores how our senses shape our relationship with the natural world, including our sense of smell and ‘the smells of space’.

Pre-booking is required but you can sign up for the event for free here – https://www.nhm.ac.uk/events/lates.html

 

What to expect

Explore how your senses shape your relationship with the natural world as you experience new sensations. An evening of stimulating experiences, including smells from far-off planets, multisensory art installations and a basement tattoo studio. Need to give your senses a break? Sit down with us for a chat about senses in nature, psychedelic cave therapy and new ways to create music.

 

The Smells of Space

What do other planets smell like? How do we know? Hear from an astrobiologist and perfumer about her mission to understand, and replicate, the aromas of far-away places in the universe.

Book your free ticket – https://www.nhm.ac.uk/events/lates.html

By SmellTaste
Latest News
20 April 2023

Recognition and better care for those experiencing smell loss due to Chronic Rhinosinusitis with Nasal Polyps

20th April 2023 is the second annual Global Awareness Day for Chronic Rhinosinusitis with Nasal Polyps(CRSwNP) and SmellTaste is calling for greater recognition, support and early diagnosis and treatment for people experiencing loss of smell due to this debilitating condition. 

Our CEO Duncan Boak was part of a discussion panel organised by European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA) to mark the awareness day.

EUFOREA panel discussion
EUFOREA discussion panel in Brussels, 19th April 2023

Duncan shares his reflections on the discussion and why collaboration between patients and clinicians is so important.

In a recent international patient survey undertaken by SmellTaste and the University of Anglia*, 71% of respondents said that impaired smell was the most significant symptom of CRSwNP. The level of satisfaction with the management of smell and taste disturbance by doctors was lower compared to management of the condition overall.  The results showed major variations in care, but also demonstrated the difference that can be made to people’s lives by the right treatment plan with the support of a specialist who listens and cares.

These findings were very much echoed in the filmed panel discussion I was part of this week organised by the European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA), who created the CRSwNP awareness day. In the discussion I highlighted the need for doctors to recognise the significant impact that smell loss has on so many aspects of people’s lives and physical and mental health, and do their utmost to support and treat patients.

We heard powerful testimonies from Chabha, Daisy and Natasha on their personal experience of CRSwNP and how losing their sense of smell affected their lives.  What came through clearly from their stories was the importance of early diagnosis and being given the right treatment.  Chabha was seen by a specialist quickly, and ultimately was prescribed a treatment that has restored her sense of smell.  By contrast, both Daisy and Natasha both had to wait several years before they were seen by an ENT specialist.

GPs often act as gatekeepers, by enabling patients’ access to specialist care. However, we know that many people do not always get the timely referral or adequate support to help them manage their condition. Our Barriers to Effective Healthcare for People with Smell and Taste Disorders study showed that people can sometimes get stuck in a cycle of repeat visits to their GP without being given a referral or effective treatment.  But sometimes people don’t get effective treatment even after referral to a specialist.  There are many reasons for this; CRSwNP is a complex condition that is not easy to treat. But there are variations in how patients are treated and managed, something that EUFOREA is working to address.  And in the UK, the MACRO project is focused on identifying the best management for patients with Chronic Rhinosinusitis.

There’s an important role for patients to play in this too. Self-management and sticking with a course of prescribed treatment is very important; something as simple as regular sinus rinsing can make a real difference for people. Also, being informed about the condition, and having the knowledge and confidence to talk to one’s doctor and push for a referral to a specialist.

There’s work to be done, with a real need for improved education for both patients and professionals alike.  The real positive that I took away from this week’s meeting was the shared consensus and commitment to work in partnership to deliver better outcomes for patients.   SmellTaste and EUFOREA’s goals are very much aligned and I am really looking looking forward to us working together over the months and years ahead. I’d like to take the opportunity to thank the EUFOREA team for all the work they are doing on behalf of the many people living with this debilitating chronic disease.

Duncan Boak

Chief Executive and founder, SmellTaste

*A research paper based on the results is in the process of being published

By SmellTaste
Latest News
19 April 2023

SmellTaste supporting Global CRSwNP Awareness Day

SmellTaste is pleased to be supporting the Global CRSwNP Awareness Day, taking place on 20th April. Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) is a major cause of smell loss.

SmellTaste CEO and Founder, Duncan Boak, will be joining a panel discussion and talking about the needs and perspectives of the many people who experience loss of smell as the result of CRSwNPs, as well as highlighting findings from new research undertaken by the University of East Anglia and SmellTaste.

Taking place on 20th April, the aims of this campaign are:

  • to raise awareness of CRSwNP and comorbidities (asthma, atopic dermatitis, and its impact on quality of life among physicians, and policymakers),
  • to encourage healthcare professionals at all levels to learn more about how they can improve outcomes for patients living with CRSwNP through improved diagnosis, treatment, and referrals to specialist care,
  • to educate patients on the symptoms of CRSwNP so that they can seek appropriate care in the management of their disease or to support loved ones suffering from CRSwNP and associated comorbidities including Asthma, Atopic Dermatitis (Eczema, and Allergy – respiratory or food allergy).

For more information about the event, and how you can join in please click here. #LetsTalkCRS

If anyone would like to speak with us to get support or more information then please drop us an email at info@fifthsense.org.uk

The impact of CRSwNP is hugely significant, as detailed in Alison Tansey’s story, who lost her sense of smell very gradually around 2009. Alison says “The worst thing was not being able to taste the flavours of food, or smell lovely things like freshly baked bread, or roses in the garden.”

Despite using a form of nasal spray which didn’t have any effect, and having nasal polyps removed by surgery, Alison still couldn’t smell, and was told she may have to get used to never being able to smell again.

Alison describes her discovery of SmellTaste “One day my lovely friend Linda gave me a magazine article about SmellTaste. I was amazed to find out there was a charity for people with my condition and that I was not alone! I had reached a point where I was desperate to learn if anything could be done for me. I decided to take the plunge and register for the SmellTaste Conference in 2015, hoping I would hear about some new ground-breaking treatment.

One of the conference speakers was ENT Consultant Lisha McClelland, who also took part in a workshop for people with my type of condition, caused by rhinosinusitis / allergy / polyps, etc. I was very impressed by her and a short time after the conference I asked my GP to refer me to her Smell & Taste Clinic at the Queen Elizabeth Hospital in Birmingham. I told her my story and was diagnosed as having stage 2 polyps. I was prescribed a course oforal steroids, a daily antihistamine tablet, twice daily nasal rinses and twice-daily steroid nasal drops, Flixonase. I was also encouraged to get started on daily smell training, as soon as the course of oral steroids was completed.

After about 4 weeks of this intensive treatment I could smell again. I was absolutely ecstatic. I am so grateful to SmellTaste as I would never have got to where I am without their help. I hope my story will inspire people with my condition not to give up, to ask for help from the right people and to be prepared to put the effort in to maintain their sense of smell and taste when they get it back. It is well worth it!”

We are very grateful for Alison sharing her experience and to read her full story please go to: https://www.smelltaste.org.uk/stories/alisons-story-able-to-smell-again-after-successful-treatment-for-rhinosinusitis/

By SmellTaste
Latest News
13 April 2023

#LetsTalkSmellAndTaste – Acquired Anosmia Support Group

Sign up for free here >

EVENT DETAILS

Sign up for free here >

Have you been affected by smell loss? Would you like to connect with other people that understand? Then join us for our next #LetsTalkSmellAndTaste Acquired Anosmia Support Group. Hosted by Tom Laughton and SmellTaste volunteers, this event will provide you with an open, supportive and relaxed environment to share and discuss your thoughts and feelings about acquired anosmia.

TOPIC: Acquired Anosmia Support Group

HOST: Tom Laughton & SmellTaste Volunteers

DATE: Thursday 20 April 2023

START TIME: 19:30 UK TIME
(PLEASE CHECK: 20:30 CEST, 02:30 AWST, 04:00 ACT, 04:30 AET, 14:30 ET, 13:30 CT, 12:30 MT, 11:30 PT).

FORMAT: Open Discussion

CONDUCTED ON: ZOOM (The ZOOM link will be sent with the ‘Joining Instructions’ for this event)

DURATION: 1:00 HR (Approx.)    

Acquired Anosmia Definition: The loss of the ability to smell from any causation.

Sign up for free here >

By SmellTaste
Latest News
12 April 2023

Did you know about the Priority Services Register?

Our sense of smell is our early warning system for hazards such as gas, smoke and spoiled food. Yet we often take it for granted and don’t appreciate the vital role it plays in our lives.

 

The Priority Services Register (PSR) can help.

If you have a poor, altered, or no sense of smell you can sign up to the Priority Services Register – a free support service that makes sure extra help is available to people in vulnerable situations.

For more information on the Priority Services Register (PSR) click here, or to join complete this registration form provided by Cadent, the UK’s largest gas distribution network and SmellTaste’s partner.

SmellTaste is working with Cadent, to highlight the essential role that smell plays in our health, wellbeing and safety and enable people with a poor, altered or no sense of smell to stay safe and well at home.

Download our safety leaflet below to read our advice and follow some simple steps to help stay ‘SmellSafe’ at home.

As well as Gas Safety, you can also utilise SmellTaste’s tools to help with Fire Safety, Food Safety and Carbon Monoxide.

Fire safety – Sometimes we can see a fire but a lot of the time our sense of smell can provide us with an early warning signal, something that those of us with a smell disorder are unable to rely upon.

Food Safety – People with a poor, altered or no sense of smell also face problems when it comes to storing and eating food. Without smell to act as an indicator of when something is starting to turn bad there is the risk of sickness or food poisoning.

Carbon Monoxide – Carbon monoxide has no smell at all, making it very difficult to detect a leak. You can’t see, hear, taste or touch the gas either – this is part of the reason it’s known as ‘The Silent Killer’.

If you have any further questions on staying safe, please visit www.fifthsense.org.uk/safety or get in touch with us directly for support.

By SmellTaste
Latest News
7 April 2023

SmellTaste Members Get-Together

Join us for our SmellTaste Members get-together

Thurs 11 May 2023, 10.00am – 12.30pm

FREE to SmellTaste Members

Living with a smell and / or taste disorder can be very challenging and can often leave people feeling isolated and misunderstood by those around them. This will be an opportunity for members with a smell and / or taste disorder to chat with others living with a smell or taste disorder and to meet with some of the SmellTaste Team.

Professor Carl Philpott will join us for a Q & A session before he opens our two-day symposium for clinicians and researchers with an interest in smell and taste disorders.  Please be aware that the Prof will not answer any personal medical questions.

Event schedule:

10:00 REGISTRATION *

10.15 WELCOME – Duncan Boak

11:00 Q&A with Prof Carl Philpott

12.30 END

* Tea & coffee will be provided.

Please note, due to room capacity, places are limited to 40 SmellTaste members. Please don’t register unless you are sure you can attend.

Thank you. 

Eventbrite link: https://www.eventbrite.co.uk/e/the-fifth-sense-members-forum-2023-tickets-608682986197

By SmellTaste
Latest News
6 April 2023

SmellTaste delivers ‘Let’s Talk Long Covid’ educational session for Occupational Therapists and Physiotherapists

Duncan, Sarah and volunteer Kirstie Goodchild delivered an education session on smell and taste disorders for a group of Occupational Therapists and Physiotherapists. The webinar was part of the Royal College of Occupational Therapists and Chartered Society of Physiotherapists ‘Let’s Talk Long Covid’ series.

We highlighted how smell dysfunction impacts on the diet and nutrition, mental health and safety of those affected. In addition to this, we raised awareness that smell disorders are more than just Covid-related, but can be down to other factors, such as head injuries and our aging process – topics which are particularly relevant to Occupational Therapists and Physios.

Kirstie is an occupational therapy postgraduate student at the University of East Anglia. From March 2020 to July 2021, whilst she was a psychology undergraduate student, she experienced anosmia and parosmia as a result of Covid-19.

Kirstie says “Whilst I am now asymptomatic, having these smell disorders negatively impacted my life at the time in several ways. These consequences included my ability to eat healthily being disrupted as food tasted distorted, having poor concentration on my studies due to improper nutrition and health anxiety, and being unable to eat or drink socially as usual with friends.

My practical self-management of these symptoms included seeking symptom education and adapting my normal routine and diet. These interventions align with occupational therapy clinical reasoning related to psychoeducation and activity analysis. The benefits these interventions had on my mental health and occupational engagement encouraged me to explore their theoretical underpinning further, supporting my decision to begin the Master’s course in Occupational Therapy.”

Kirstie Goodchild, SmellTaste Volunteer

Kirstie played a pivotal role in the session by sharing her own experience first-hand as a trainee Occupational Therapist. Kirstie said “It was a great pleasure to share my experiences and rationale with my fellow allied health professions colleagues in the recent RCOT and CSP meeting. I feel hopeful that the education and ideas SmellTaste shared will help positively benefit the lives of the long covid and smell disorder patients that the attendees may encounter in the future.”

A big “thank you” to Kirstie from everyone at SmellTaste for volunteering at this session, and sharing your story which was hugely impactful.
By SmellTaste
Latest News
4 April 2023

Smell and Taste Symposium 2023

This two-day event (11-12th May) is perfect for clinicians and researchers interested in olfaction, gustation and chemosensory disorders. In addition to lectures, there will be practical demonstrations and interactive workshops for attendees to get involved in. The symposium will be a hybrid format enabling those to attend in person or online via Zoom. CPD points will be awarded for each day of attendance. Lunch and refreshments will also be provided for those attending in person, with an optional course dinner on the Thursday at the Assembly House, Norwich.

Website:  https://rhinology-group.uea.ac.uk/smell-and-taste-symposium/

This year promises to build upon the success of last year’s event, focussing on patient perspectives and presentations from global experts in the field of smell and taste. Professor Carl Philpott, Professor of Rhinology and Olfactology at the University of East Anglia will be speaking, in addition to Prof Thomas Hummel, Assoc. Prof Matt Lechner, Prof Eric Holbrook, Dr Julien Hseih, Miss Lisha McClelland, Mr Simon Gane, Dr Saber Sami and Prof Antje Welge-Lüssen. Topics covered in the programme include the latest information on investigations, chemosensory testing, current and future management strategies and research priorities.

For further information and information on how to book, please go to the website:
https://rhinology-group.uea.ac.uk/smell-and-taste-symposium/   

Contact: Kay Tate

Telephone: +44 (0)1603 593061

Email:  k.tate@uea.ac.uk

Website:  https://rhinology-group.uea.ac.uk/smell-and-taste-symposium/

Twitter: @carlphilpott

Award: 4 CPD points per day (TBC)

By SmellTaste
Latest News
31 March 2023

Debs Davies appointed to the SmellTaste Trustee Board

We are delighted to announce the appointment of Debs Davies to the SmellTaste Trustee Board. Debs, who has congenital anosmia, came across SmellTaste about 5 years ago while researching about her condition. She’s been an ambassador since 2021 and has a particular interest in the mental health and well-being of people affected by smell & taste disorders.

Debs is passionate about the important work that SmellTaste does in providing awareness, tools and support. She stated “we know that smell/taste disorders impact every aspect of a person’s life, including their emotional wellbeing. I’d never met anyone else who couldn’t smell until I came across SmellTaste and being involved has brought me a community of people with a shared experience & understanding of the issues we face.”

By day, she is the founder of Vibrantly Divergent: a company that provides specialist ADHD coaching for highly driven professionals. Using a strengths focused approach, she helps people to understand their ADHD brain and how to work with it so they play to their strengths whilst managing their challenges in a sustainable way.

Debs is also an experienced consultant & senior leader, having spent over 25 years in a range of progressive, successful public and private sector organisations, including the NHS, local authorities, education, property and financial services.

More recently, Debs has integrated this experience into her work with neurodiverse professionals by providing training & consultancy services to help organisations understand ADHD – a widely misunderstood and highly stigmatised condition – and to advise how they can become more neuroinclusive.

Bringing divergent thinking and an open mind, Debs has an empathic and calm manner coupled with a driven, solution-focused approach. The opportunity to bring this to SmellTaste alongside the advocacy & support work is welcomed. Originally from Lincolnshire, Debs now lives in Cheshire with her husband and two teenage children.

For more information about Debs, head over to ‘Our Team’ page –  https://www.smelltaste.org.uk/team/debs-davies/

By SmellTaste
Latest News
30 March 2023

SmellTaste visit NHS Post-Covid services in Chester

Last week, SmellTaste CEO and Founder, Duncan Boak, was invited to Chester by the NHS Post-Covid Service (pictured above). Duncan spoke with members of the local Long Covid Support Group, who shared their experiences of smell and taste problems. It was clear that whilst some people’s sense of smell has recovered, others are still struggling with ongoing loss of smell and parosmia.

Some spoke about the general lack of recognition and support from their doctors. Duncan talked about the partnership between SmellTaste and Cadent, the UK’s largest gas network, whose funding is enabling the charity to increase its training and educational activity for health and social care professionals to help tackle this issue – read more about the partnership here.

Following Duncan’s talk to the local Wellbeing team, made up of prescribers working with GP practices in the area, feedback was shared on smell impairment and safety. Particular concerns were raised about older people they work with, and indeed family members with a poor sense of smell. As a result, the support, information and resources provided by SmellTaste was hugely welcome, and building on this as a result of the Cadent funding, will be game-changing.

Duncan said ‘My visit really highlighted the challenges faced by people living with smell dysfunction as part of other Long Covid symptoms. Hearing someone talk about how their brain fog means they can forget they’ve put the oven on, and are then unable to detect the smell of burning.  The work we are doing in partnership with Cadent is helping make people aware of the dangers associated with being unable to smell, and what steps they can take to manage this. It’s great that the team are going to sharing our resources going forwards to help support people’s wellbeing and safety. Many thanks to Fleur, Ceri and their colleagues for the fantastic work they are doing to help people living with smell and taste disorders’.

By SmellTaste