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Category: Latest News

Latest News
23 February 2022

#LetsTalkSmellAndTaste – Congenital Club

Congenital Club is an open, supportive space for people that were born without a sense of smell to connect and communicate with others who may have been through similar experiences. Held on ZOOM and hosted by our SmellTaste Ambassadors, we welcome people from all over the world to come and discuss congenital anosmia.

Eventbrite: Congenital Club
EVENT DETAILS

TOPIC: Congenital Club

HOST: SmellTaste Ambassadors

DATE: Tuesday 1st March 2022

START TIME: 18:30 (UK TIME)

FORMAT: Open Discussion

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

DURATION: 1:00 HR (Approx.)    

By SmellTaste
Latest News
16 February 2022

Girl Who Can’t Smell’s Official Anosmia Awareness Day Party

With #AnosmiaAwarenessDay just being around the corner, SmellTaste ambassador the Girl Who Can’t Smell is hosting a #Facebook Livestream on the 27th February to celebrate this important day for people impacted by smell disorders.

“ARE YOU READY TO Celebrate Anosmia Awareness Day? Our super unique, one-of-a-kind special day is coming up soon! Let’s chat, hangout, share our stories and have fun! Pop in any time during the livestream but secure your space! RSVP’ing to this event enters you into my live giveaway!”

To show your interest in this exciting event, please click the link provided:

By SmellTaste
Latest News
31 January 2022

Our Thanks to Nina

It’s a sad day for us all at SmellTaste as Nina Bleasdale leaves us to take up a new role within the NHS. Nina has been a fantastic colleague and I would like to take the opportunity to thank her for all her hard work over the last two years and share my perspectives on the impact that she has had during her time with us.

Nina joined SmellTaste as our Director of Development and Operations in February 2020 after 14 years in the NHS. She became our first staff member, starting in what was a brand new role both for her and us, in a completely different operating environment to the one she was used to.

Within only a matter of weeks things changed completely with the onset of the Covid-19 pandemic. Not only were we unable to deliver our plans in the way we had intended, we were faced with a significant increase in demand for our information and services. On top this were the challenges that the pandemic and lockdowns placed on us all.

The way that Nina has driven SmellTaste forwards in spite of these challenges has been remarkable. Her dedication, initiative and enthusiasm has resulted in us delivering a significant body of work and a fantastic level of support and engagement not only to people in the UK but across the world; our new information resources and website, the highly successful #LetsTalkSmellAndTaste programme and our growing team of SmellTaste Ambassadors being just a few examples. One particular highlight for me is Nina’s excellent work as operational lead for the Smell and Taste Disorders Priority Setting Partnership alongside a team of SmellTaste members, clinicians and representatives of the James Lind Alliance.

Nina has been a fantastic ambassador for SmellTaste, our cause and the people we represent and she has done it with passion, kindness and a smile on her face at all times. It has been a pleasure and a privilege to work with her. On behalf of myself and everyone at SmellTaste I would like to say a huge thanks to Nina for all her hard work and we wish her all the very best in her new role.

Duncan Boak

Chair and founder

By SmellTaste
COVID-19Latest News
24 January 2022

“It’s Like Walking Around in a Bubble”… Smell Disorders Are Not Just Covid

This morning, SmellTaste Director of Medical and Research Affairs, Prof. Carl Philpott was joined by SmellTaste volunteers and advocates, Tom Laughton and Ruth Sullivan in talking to Eamonn Holmes and Isabel Webster on their breakfast show.  Whilst smell disorders have very much been a feature of the Covid-19 pandemic, they are not a new phenomena.  We are often discussing the unintended benefit of awareness that this virus has brought to the cause.  News outlets however, tend to focus on the present and the current.  Hyposmia from a head injury or anosmia with no known reason don’t (in the fast paced media world) have the same interest or even “excitement” about them.  Not for us.  And not this morning. SmellTaste are here for anyone who needs us, for whatever reason they need us and for however long they need us.  For #allthosmias.  Tom and Ruth, as people affected by non-Covid smell disorders, share how their experience affects their life.  Our thanks to them all for the work they do to help us deliver education and improve awareness.

By SmellTaste
COVID-19Latest News
21 January 2022

SmellTaste Highlights the Impact of Parosmia on Young People

On 18th January SmellTaste released a statement in partnership with the University of East Anglia highlighting the devastating impact post-Covid parosmia – the medical term for a distorted sense of smell – is having on children and teenagers.  It included the story of Dawn Kafi and her son Malisse, who stopped eating after catching Covid. Malisse complained that food tasted like sewage and rotten eggs. By November 2021 he had lost 2kg in weight and was taken to hospital.

Whilst the charity has been supporting people affected by parosmia since our inception, Autumn 2021 was the first time we had received widespread reports of young people being affected.  Our team worked with Dawn and other parents to develop an information sheet (download it using the link below this article) aimed at healthcare professionals and parents to help them support children experiencing this distressing condition.  Since this was released on Monday there has been significant interest in this issue.

  • Over 75 press pieces, including  The Independent and mainstream news channels such as the BBC and Sky. 
  • Our Medical Director Prof. Carl Philpott and Chair Duncan Boak featured on the BBC Look East TV programme 
  • Duncan and Dawn were interviewed together live on BBC Radio Merseyside
  • SmellTaste has been contacted by parents grateful to see this being highlighted. We have established a Parent Support Group to share experiences and continue to raise awareness that this is a significant public health issue that should not be dismissed as fussy eating. Please email us at info@fifthsense.org.uk if you would like to join the group.

We would like to say a huge thank you to Dawn, Malisse and the other parents who have been involved in creating the guidance.  We have a section on our website dedicated to children and young people and their parents/carers that you can visit for more information and support.

Information Sheet: Supporting Children & Younger People With Parosmia

Download
By SmellTaste
COVID-19Latest News
18 January 2022

Parents Reporting Children Who Are Experiencing Parosmia, Seek Support and Understanding

The Covid-19 pandemic continues to affect people across the world. The overarching repercussions of the virus are still being understood but experts do suggest that now children are not experiencing distortions in the sense of smell (parosmia) and it is starting to have a detrimental affect on their eating habits and well-being.

As we reported across our social media channels last month, Dawn Kafi’s son Malisse has experienced these consequences first-hand. She stats in the Liverpool ECHO:

“He started saying food was off and it continued. I cooked all his favourite foods but he said everything smelt.

He said food tasted like sewage and poo and water tasted like rotten eggs and he would keep throwing up.

It wasn’t just food. It was supermarkets, the smell of cars going past it all made him retch. I didn’t know what to do or what it was.

I stopped cooking so there were no unpleasant smells in the air and we tried everything to get him to eat.

He’d been really good with Covid, he had no symptoms and he always wore his mask because his brother is severely disabled and he kept everyone safe, but all of a sudden, he just stopped eating.

He would look at it and start gagging. He couldn’t cope with the smells and physically couldn’t eat. We couldn’t go to the supermarket, it was horrendous.”

Our Director of Medical and Research Affairs Professor Carl Philpott who has noticed more people across the UK and overseas contacting him about their children experiencing this smell disorder, suggests that:

“Establishing what the triggers are and what tastes OK is really important.

There are lots of common triggers, for example cooking meat and onions or garlic and the smell of fresh coffee brewing, but these can vary from child to child.

Parents and healthcare professionals should encourage children to try different foods with less strong flavours such as pasta, bananas, or mild cheese – to see what they can cope with or enjoy.

“And it may sound obvious, but children could use a soft nose clip or hold their nose while eating to help them block out the flavours.”

SmellTaste have collaborated with parents and with professionals to create a Learning Zone Information Sheet.  We have also established a Parents Support Group – if you would like to join, please get in touch info@fifthsense.org.uk 

To access Information Sheet #11 Supporting Children and Young People with Parosmia, please click the button below and it will download onto your desktop:

 

Download
By SmellTaste
Latest News
13 January 2022

Join the SmellTaste Community in 2022

It’s a New Year and we have even more reasons for you to join SmellTaste.

If you join us as a FREE member you will be able to access the following benefits: 

  • Our members monthly newsletter, Quintus Sensu with regular features, shared experience stories, information about research and tips and advice on living with a smell/taste disorder.
  • Invitations to take part in credible research, surveys and clinical trials.
  • Priority booking to #LetsTalkSmellAndTaste online conversations and webinars before dates are released to the general public.
  • Priority booking to our Bi-Annual National Conference and other events before they are made available to the general public.
  • Opportunities to get involved in our local Hubs and fundraising.

If you are interest in you joining SmellTaste, you can do so by clicking the link provided and following the instructions: Join SmellTaste

By SmellTaste
Latest News
10 January 2022

SmellTaste Statement: Morrisons’ Removal of Sell-by Dates on Milk

Statement from Chair and Founder, Duncan Boak
I am extremely concerned that the decision taken by Morrisons to remove sell-by dates from milk products and instead ask customers to use a ‘sniff test’ to detect sour milk excludes many vulnerable people with an impaired sense of smell across the UK. 

As the charity for people affected by smell and taste disorders, we represent a large body of people who are at risk of being unable to smell hazards such as gas, smoke and spoiled food. This number has increased significantly over the last two years due to people experiencing smell disorders as a result of Covid-19.  

I have written to Morrisons on behalf of SmellTaste and the many people who have contacted us since this news was announced to share our concerns.  We will keep you posted on any developments.
 
We are already working in partnership with Cadent, the UK’s biggest gas distribution network, to help raise awareness of the importance of the sense of smell from a safety perspective, and the news about Morrisons’ decision serves to highlight the need for this important work.  
 

We have also produced lots of resources as part of our Learning Zone including Information Sheet #8 –  SafetySense which was designed to help people affected by smell disorders with concerns about safety.  It can be downloaded from our website by clicking here.

 
If you have been affected by this story, please do not hesitate to contact us for support: info@fifthsense.org.uk 
 
Duncan Boak
Chair and Founder
SmellTaste
By SmellTaste
Latest News
10 January 2022

Oxford Brookes University Research Survey Update

The Effect of Smell and Taste Disorders in Long-Covid on Mental Health Disorder Symptomatology

Thank you to everyone who has taken part in this study – the response has been fantastic.

The researchers at Oxford Brookes University are still keen to hear from people who DO NOT HAVE a smell or taste disorder to help form a comparison group for their investigation into how losing or noticing changes to taste and/or smell due to Covid-19 might have an impact on mental health. The study is completely anonymous and the only criteria for people who do not have changes to their taste or smell to complete the questionnaire for this group is that they are also over 18 years old  Please click here if you’d like to take part.

Lead researcher, Dr. Andy Mitchelmore explains: “Having participants who do not have a smell/taste disorder will help us to establish a comparison group and understand what the impact of smell/taste disorders are on those who are experiencing this. The mental health of people living with impaired taste and smell is hugely important to investigate.”

He continues: “We have now collected sufficient participation from people who have had issues with taste and/or smell, but we still need to collect data from people who have no history of Covid-19 or taste and/or smell loss – so if you have had no taste or smell issues, please do take part and help us by asking your family and friends to get involved.  This will allow us to come up with more definitive findings which will create far stronger evidence about the importance of taste and smell loss relating to mental health.”

You have the option of providing an email address so you can receive a copy of the study when it’s completed – we will include the outcomes on our ‘Research’ page when they are available.

By SmellTaste
Latest News
24 December 2021

Christmas and Year End Message from Our Founder and Chair

I hope you are looking forward to the Christmas break and some time with loved ones after what has been a challenging year for us all. 2021 has, I think, been the busiest yet for SmellTaste. We have achieved a great deal, in spite of the difficult circumstances created by the ongoing pandemic.

In November we delivered our biannual national conference which was a real success. It was great to be together in the same room with people again and having three of the world’s leading smell and taste scientists fly over to attend the event in person felt like a huge achievement after everything that has happened over the last two years. I would like to thank our speakers, everyone who attended in-person or virtually, our sponsors GSK, Medtronic and Sanofi and the team at the Hotel Brooklyn in Manchester for making the event such a success. Preparing for the conference provided me with an opportunity to look back and reflect on the progress we have made as an organisation and community in the two years since the last event and I wanted to share a few highlights of what we have achieved over the course of 2021.

We have continued to deliver on the plans for which we are being funded by the National Lottery Community Fund, launching a raft of new resources including a completely redesigned website, suite of information sheets and new videos.

We have grown our volunteering team, welcoming new members to our Ambassador programme. We have also strengthened our already highly capable trustee board, welcoming Robert Meadowcroft, who brings a significant amount of experience as former CEO of Muscular Dystrophy UK.

We have brought together over 1,000 SmellTaste members on our #LetsTalkSmellAndTaste virtual sessions and delivered a range of webinars for healthcare professionals.

We have successfully delivered the Smell and Taste Disorders Priority Setting Partnership to establish a set of research priorities, an inclusive process that brought together the experience and expertise of SmellTaste members, your families and clinicians.

I would like to take the opportunity to say a huge thank you to everyone who has contributed to our work in 2021, and please join me in thanking Nina and Dan, our staff members, for all their hard work during some difficult times. They have both been fantastic.

We are now at another exciting stage in our evolution with the SmellTaste board’s recent decision to recruit a Chief Executive to drive forward the development of our charity and its work. The vacancy can be viewed on our Current Vacancies page by clicking here  and I would please ask you to share it with anyone you think may be interested in the role. We are also looking forward to releasing the ‘top 10 priorities’ for research into smell and taste disorders, as chosen through the Priority Setting Partnership. These will be announced in the new year at the heart of our new research strategy which is being developed under the expert leadership of my fellow trustee Prof Carl Philpott.

I am sure 2022 will be an exciting year for SmellTaste and our cause and we are looking forward to going on that journey with you. I know these are difficult times for many people but we will be incredibly grateful if you would consider making a donation to support our work. Donations of any size help us in all sorts of ways; they’ll contribute to the development of a research fund, allow us to deliver more education to health professionals and also reach and help more people. You can donate safely and securely by clicking here to donate via our Wonderful page.

Thank you very much indeed for your support. I hope that you and your families have a safe and enjoyable Christmas and a relaxing break after all the difficulties we have faced this last year. I will look forward to being in touch again in the new year.

Duncan BoakChair and Founder 

By SmellTaste