Parosmia – distortions of the sense of smell – has a significant impact on people’s physical and mental health and wellbeing, with many people having difficulties eating, suffering anxiety and depression and withdrawing from social situations. Christmas is one of the toughest times of the year for those of us struggling with this hidden, life-changing issue.
SmellTaste provides ongoing support and information to both adults and parents of children who have been struggling with ongoing parosmia for over two years in some cases.
This issue is being compounded by the lack of knowledge and specialist services within the NHS. People contacting SmellTaste keep telling us they are not getting the information and support that they need from health services and often resort to spending money on unprescribed and ineffective treatments or complementary therapies. There is a lack of available treatment options due to a chronic lack of funding for research. The following quote from a SmellTaste member highlights the situation:
‘I lost my smell and taste 14 months ago and what started as anosmia quickly turned into parosmia. I have tried so many treatments and therapies that have resulted in nothing other than disappointment and financial loss. I’m so depressed and cry everyday as I can’t live a normal life.’
People are frustrated and need answers, support and treatment. That’s why we have written to Secretary of State for Health and Social Care Rt Hon Steve Barclay MP calling for urgent action on this issue.
SmellTaste is also working with Long Covid multi-disciplinary teams and community nursing groups around the country to help them understand the challenges people with parosmia face and what can be done to help.
Support and Information
If you’re affected by parosmia then SmellTaste is here to help. We hold regular Parosmia Network virtual support sessions, with the next one of these due to be held in January 2023. If you’d like to attend then join SmellTaste for free here. Â
We also provide a range of information resources which you can access here:
SmellTaste is here for everyone affected by a smell or taste disorder, regardless of how it affects you or the cause. If you need support or have questions then please get in touch with us at info@fifthsense.org.uk
People that are living with parosmia are beginning to be heard and this is good news for everyone affected by a smell and taste disorder and a big step forward in getting the voices of those with a smell and taste disorder heard.
Dr Bradley Goldstein associate professor in neurobiology at Duke University in North Carolina and contributor to the SmellTaste Research Hub (www.fifthsense.org.uk/research) has spoken to The Guardian explaining the recent study which was undertaken to enable researchers to understand why people, after contracting Covid-19, are experiencing distortions in their sense of smell: bit.ly/3hLCIQs
Research is a vital tool for SmellTaste and is one strand of our strategic vision, which also includes both education and support. One of our Trustees, Professor Carl Philpott who is a leading expert in this area heads our research board looking for answers to those questions.Â
To support those affected, we have created various tools including our personal one-to-one support service, SmellTaste Research Hub and our #LetsTalkSmellAndTaste events. We have a Parosmia Network session planned for the end of January 2023. If you would be interested in attending this event, please join SmellTaste for free at:Â www.fifthsense.org.uk/join
Parosmia can be very difficult and we understand the stress it can cause. Known possible long-term consequences can include:
  · Lack of nutrition due to a restricted diet.
  · Safety issues, including not being able to detect gas, smoke/fire or out-of-date produce.
  · Can cause isolation from friends and family due to a lack of knowledge and understanding.
At SmellTaste we will continue to work with NHS staff and Long-Covid groups to provide them with the tools and resources they need to support people affected by not just parosmia but all smell and taste disorders.
Finally, in recent weeks parosmia has also featured in the METRO with SmellTaste volunteer Kloe Avon sharing her experience (bit.ly/3tBhBT1), while the BBC has written an excellent article examining the impact of those affected with parosmia.
This is a positive step in the right direction, the more press coverage parosmia (and other smell and taste disorders) receive, the closer we get to improving support services and potential treatments, that are shown to work.
Further Resources
We’re coming to the end of a busy year, after a tough few months for us all. I hope you’re looking forward to having a break over Christmas break and spending some time with loved ones.
As we approach the end of 2022 I wanted to share a few reflections. It has been a year of significant development on all fronts at SmellTaste, whilst building solid foundations from which we can grow and develop the charity and our work in the new year.
We’ve worked to ensure that the needs of people affected by smell and taste disorders are represented, for example getting the Food Standards Agency to update their guidance and ensure that retailers don’t advise customers to rely on a sniff test for detecting out of date food. We also successfully lobbied the General Medical Council to add anosmia to the topics on which medical trainees are assessed in the UK.
We have increased the scope of our support and information services, with the aim of ensuring that everyone with a smell or taste disorder feels represented and included. We have been holding regular meetings for people with congenital anosmia alongside our Parosmia Network and Acquired Anosmia sessions, all of which feature contributions from members of our Ambassador team. We also launched a parents support group early in the year to assist parents whose children were struggling with post-Covid parosmia. We continue to receive positive feedback on our sessions, with people really valuing the sense of community and opportunity to share experiences.
We have also responded to the increase in demand for our education and training work too; we’ve delivered sessions for NHS Post-Covid Services, ENT registrars, community nurses, community pharmacists and other health and social care professionals to help them understand the consequences of smell and taste dysfunction and what can be done to help and support those affected. We also worked with the University of East Anglia to hold a successful symposium on smell and taste disorders for researchers and healthcare professionals which will be back in 2023.
In May we launched the SmellTaste Research Hub to take forward the outcomes of our Priority Setting Partnership, and since then Prof Philpott and I have been working with the Research Hub team and our advisory board members to identify opportunities to take forward our research plans.
There has been a great deal of development within the SmellTaste team too, starting with a major achievement for Dan, who completed his Marketing Apprenticeship and was awarded a distinction. A great result on the back of a lot of hard work and I’m sure you’ll join me in congratulating Dan. In September we welcomed Sarah Pearce to the team, and I’d like to take the opportunity to personally thank Sarah for the significant contribution she is making. It’s been a time of development for me personally too, in my new role of CEO, and I’ve been working closely with Robert Meadowcroft, who is enjoying his first year as Chair.
Finally I would like to highlight how we have grown as a community, without the restrictions imposed on us by Covid. Our recent event in Cheltenham, in partnership with Mr Okonkwo’s new clinic, was a huge success, and followed closely by our inaugural Volunteer Forum to recognise the contribution made by our volunteers. At both events I was struck by the keenness of so many people to play an active role with SmellTaste, whether through fundraising, awareness-raising activities, or providing much-needed support to others.
It has been a busy year, and I’m incredibly proud of what we are achieving together, thanks to the hard work, commitment and determination of our small staff team and volunteers. Many thanks to you all for your support and do please get in touch if you would like to get involved, and please do consider making a regular donation to help us grow, develop and do more.
We’re planning on making even bigger strides forward in 2023 and I will look forward to sharing further details on our plans. In the meantime myself, Sarah and Dan are looking forward to Christmas with our families. We hope you enjoy the Christmas break and wish you all the very best for the new year.
Duncan Boak
Chief Executive and founder
A new study from the University of East Anglia has revealed that ‘a third of long Covid patients suffer persistent smell loss, with almost a fifth experiencing loss of taste’.
From the results, Prof Carl Philpott said:
“We found that almost three percent of the participants self-identified as having long Covid, and if we scale this up to reflect the UK population, it would equate to around 1.8 million people.”
“We found that fatigue was the most common symptom, whilst ENT-related symptoms included a loss of smell and taste, vertigo, shortness of breath, wheezing and a sore throat.”
“Almost a third of self-reported long Covid patients were suffering persistent smell loss, and almost a fifth were still experiencing loss of taste.”
“This is really significant because we know that loss of smell and taste really impacts people’s lives. Our previous research has shown that people who have lost their sense of smell also report high rates of depression, anxiety, isolation and relationship difficulties.”
“It can disrupt almost every aspect of life – from everyday concerns about personal hygiene to a loss of sexual intimacy and the break-down of personal relationships”
You can read the full press release on the UEA website.
Members of SmellTaste met on Saturday 10th December 2022, for a ‘tasteless’ lunch at the Victoria and Albert Museum, Dundee. It was so good to be with people again, and to share experiences and have what was for most, a good meal and catch up. We welcomed one new member, and partners, and in all everyone left smiling. We hope to set up another get together in the new year, this time in Glasgow, so that everyone won’t have to travel that far. Thanks to you all for attending, and best wishes for the season and a happy 2023.
On Saturday 3 December we held our first volunteer forum in Birmingham. It was held at the Aston Conference Centre at Aston University. This was an exciting time for us as it was the first time we have undertaken an in-person event like this.
The volunteer forum was a hybrid event so we could be joined by our volunteers whether they were ambassadors or champions and from other parts of the world, as well as areas closer to home. We were also able to welcome people who were wanting to volunteer with SmellTaste and those that wanted to know more about what they could do in the future.
It was fantastic to see so many people either virtually or in person. All our champions and ambassadors meeting online really enjoyed their conversations and the feedback we have had reflects the importance of hybrid events for SmellTaste volunteers.
Duncan started the event by welcoming everyone and outlining the day. There were some last-minute changes to the running of the day but that didn’t stop the discussions. We also had the Chair of the Board of Trustees there to explain his role and that of his fellow Trustees within a charity as volunteers.
We asked people to talk about their volunteering experiences with SmellTaste and what they might like to see in terms of volunteering at SmellTaste in the future. One of our leads, based in Scotland and who joined online, said she ‘didn’t realise that there were so many other volunteers in SmellTaste and the event made her feel really valued’. This is so good to hear and important to us at SmellTaste. We want to plan in ways that keep you, our volunteers and members, at the heart of what we do. We aim to do this by taking some of the great ideas from this day and to realise them moving into 2023.
Gloucestershire Hospitals NHS Foundation Trust opened a new Smell Disorders and Allergy Clinic at Gloucestershire Royal Hospital in November. The consultant-led service will be the first time that patients can be seen at a dedicated and specialist smell clinic in the area.
This new service is being run in partnership with SmellTaste. We will work closely with the clinic to provide local support and information to patients, help signpost people to the new service and work with hospital staff to contribute to the latest cutting-edge research in this specialist area.
On Saturday 12 November we held a joint event to launch this new clinic. Duncan Boak our CEO alongside Mr Okechukwu Okonkwo spoke about the new clinic to a packed room. Duncan spoke about the work that had been undertaken by both ENT Consultant Mr Okonkwo and SmellTaste to ensure that support would be available for those with a smell and taste disorder in the Gloucestershire area.
We were very lucky to have one of our members there who spoke very eloquently about his experiences and his loss of smell and taste journey. His thoughts and insights were broadly reflective of the experiences of many of those who attended. We would like to thank Trevor Jones for his willingness to talk about his journey and experiences.
Some SmellTaste members had travelled quite a distance, including from York, to attend the event. The feedback we received reflects the real need for more clinics like this one.
One of the important outcomes for those attending was the fact that they met other people who are affected and ‘realising that they are not alone or imagining things.’
We hope to hold more of these events in other parts of the country, working alongside medical professionals to ensure that these disorders are more widely recognised and that with our support more people will be able to access smell and taste clinics.
What is it about Christmas that sends so many of us into a frenzy? This seems to start earlier every year.
I live in a small Market town and we have already had our Christmas Lights switch on celebration, a Christmas Sparkle Event and it is not even December yet!! As a town we were lucky as it didn’t rain, not something you can bank on in late November. A dry afternoon and evening meant so many more people came out to enjoy themselves. Our local council doesn’t have an issue with closing off part of the town for any kind of local, traditional celebration so we had a street market, roving entertainers, music provided by local band playing and much more from midday. Before the actual countdown to the switch on we even had a parade through the centre of the town to the Market square.
Even anosmics like me could enjoy the atmosphere created by such a fun event. What made it even more special were the quirky street performers. My favourite has got to be the amazing roving Piano Man. This was a man playing carols on a tiny piano which was the front end of his peddle bike. I couldn’t always work out whether the bike was going sideways or the piano. Another was a lady who I swear must be double jointed. Her whole performance was based around Hula Hoops, not the snacks, the rings! She encouraged the audience to try some of her routines, no way was I going to show myself up, but some brave souls did making her audience even bigger.
What I’m trying to highlight is that you don’t need a sense of smell and taste to enjoy events like these as we approach Christmas. We can all get so much from just being at these events and being there to take part in the countdown to the lights being switched on. OK I do admit to missing out being able to smell the different foods being prepared by the mobile food vans, but I can still enjoy the spices and warmth of a mulled wine and I did!
My town holds an annual Christmas Window competition for the shops, hotels and cafes locally. This year they even offered an online map for locals to find all those businesses that have reached the shortlist. This was because we get to vote for our favourite window, but we won’t find out who has won until a few days before Christmas. All this adds to my enjoyment as we begin to get closer to Christmas.
I am sure that like me you have to choose what to eat with planning and care. Texture, colour and spice will all feature on my Christmas menu to help me get the most enjoyment out of eating on the day, but please remember it is not just food that makes Christmas special. Making it a special time with family and friends is all part of it.
It’s the traditions behind Christmas that can help to make it a time to enjoy as I found out when I went to our town’s Christmas Light switch on event. Carol services, Nativity events in local schools, decorated shop windows and, dare I say it, even the endless Christmas tunes you can’t get away from when shopping all add to making it a time we can all enjoy even when anosmic.
Have a Merry Christmas and a Happy New Year.
My name is Emily Spencer, and I am a postgraduate research student from the School of Applied Sciences at Edinburgh Napier University. I am currently running a project that will investigate the best approach for recovering a lost sense of smell, with the main goal of developing a multisensory smell retraining programme.
I am looking for participants that are currently experiencing post-infectious or post-traumatic smell loss that has lasted more than 3 months to take part in a training- based experiment. This study is based on existing smell training programmes (e.g., Hummel et al, 2009) and involves simply sniffing a set of odours twice a day for a duration of 16 weeks. If you would like to participate in this study, you will be asked to provide your age, sex, cause and duration of your smell loss. This information will not be linked to any identifying information and is only collected so that we can describe the demographics of our participants. You will be invited to a laboratory at Edinburgh Napier University (Sighthill Campus) once every two weeks for the duration of the study to take part in a smell test. At the initial testing session, smell training kits will be provided for you to take home with you.
Please note that in order to take part in this study, you need to be over 18 years old and not have a neurodegenerative condition (due to the perceptual nature of the tasks).
If you would like to sign up for this study, or request more information, please contact Emily Spencer at Emily.spencer@napier.ac.uk
Further Information and registration are also available at this link
