Fifth Sense CEO and Founder, Duncan Boak, is co-chairing a new collaborative research group, the Breakthrough Consortium for Olfactory Health (BeCOH).

The BeCOH offers hope for the millions of people globally affected by impairment of their sense of smell. The Consortium brings together charities, patient groups, research institutions, and clinicians, as well as pharmaceutical and diagnostic companies, with a common purpose: driving therapeutic and technical advances to ultimately bring benefit to those worldwide living with the life-changing impact of sensory impairments.

The BeCOH Steering Committee is co-chaired by Duncan Boak and Valentina Parma, PhD, Assistant Director, Monell Chemical Senses Center, and includes:

• Lisa Huang, PhD, Senior VP, Curie.Bio
• Joshua Levy, MD, MPH, MS, Clinical Director, National Institute on Deafness and Other Communication Disorders (NIDCD)
• Patricia Lucas-Schnarre, CEO, Ahersla Health, Inc.
• Andy Mulvaney, PhD, Founder and CEO, RhinoTherapeutics, Inc.
• Zara Patel, MD, Professor, Stanford University School of Medicine
• Nancy Rawson, PhD, Monell Executive Vice President

The Committee captures voices from patient-facing organisations, researchers, clinicians, government agencies, diagnostic, and pharmaceutical companies.

The benefits of smell to health and quality of life are often ignored until injury or disease compromises this function. In addition to the significant impact on both physical and mental health that smell disorders bring, loss of smell can be an early harbinger of a range of different health concerns, including neurodegenerative diseases such as Parkinson’s disease.

The mission of BeCOH is to establish evidence-based clinical, regulatory, and access pathways to improve diagnosis and treatment for olfactory dysfunction. Testing of the sense of smell is not undertaken routinely, unlike sight and hearing, and is currently confined to a relatively small number of specialist clinics. What’s more, there are very few treatments for many of the causes of smell impairment and a lack of research for finding new ones.

The Consortium members recognise that establishing a roadmap to implement testing and develop treatments for smell dysfunction requires a concerted, cross-sector effort to better serve those who live with smell disorders.

Valentina Parma said: “It is a challenge to move forward with such a proposition when many people are still unaware of the importance of the sense of smell to overall health and well-being.”

Duncan Boak added: “We need to work together to address what remains a significant and unmet public health need, even after the awareness generated by the Covid-19 pandemic, when so many suddenly lost their sense of smell

“By bringing together all stakeholders, the Consortium intends to be a catalyst for new research and developments and to engage with policymakers and encourage them to take action.”

At the US national level, both the 2023 – 2027 NIDCD Strategic Plan at the National Institutes of Health (NIH) and the ‘Healthy People 2030’ initiative recognise the importance of normal smell and taste function for overall health. The NIDCD plan envisions a future where medical providers use routine smell testing as an early detection tool for neurodegenerative diseases. Healthy People 2030 has an explicit goal to increase the percentage of adults with taste and smell disorders who have seen a healthcare provider specifically for their disorder from 18.5 percent to 20.4 percent by 2030.

Valentina Parma continued: “We aim to make it clear to public health officials how to adopt universal smell testing as an important tool for health monitoring and preventive care.

“We advocate for smell function to be recognized as an important element of disease prevention and management.”

Sensory, nutritional, psychological, and neurological consequences of smell dysfunction affect millions of diverse individuals. Measuring smell health over a lifetime can improve lives and reduce burdens on our care systems.

Connect with the Consortium and meet with them at the upcoming inaugural Town Hall to hear about their plan for progress and share your ideas by completing the contact form HERE. The Town Hall is scheduled for February 26, 2025 at 9am PST, 5pm GMT and 12pm EST.

Find out more about BeCOH HERE.

The Birmingham Smell and Taste Action Group is making a real impact, raising awareness of smell and taste disorders while creating a supportive community. This month, they successfully held their second meetup in the heart of the city, hosted at Runway East, who generously provided their premises free of charge.

Fourteen attendees joined the session, which featured the latest updates on smell and taste research and campaigning. Marianne Martin, a dedicated Fifth Sense volunteer and perfumer, shared insights on smell training, and Dr John King from Warwick University gave a fascinating talk on his work exploring the connection between olfaction and memory.

The event wasn’t just informative—it was a chance for attendees to share stories, experiences, and tips for living with smell and taste disorders. Participants ranged from those newly diagnosed to individuals living with anosmia, parosmia, or hyperosmia, some for over 30 years. One attendee commented, “I thought the event was extremely useful and I would like to say a big thank you to the event organisers and all who attended the session.  It is really good to know that you are not alone in your lived experiences and there are people and organisers who really understand and care”.

The group also looked ahead, planning to meet three times a year and even discussing a collaborative fundraiser for 2025. Attendees from outside Birmingham expressed interest in starting meetups in their local areas, including Mansfield, Warwick, and Stevenage. If you’re based in or around these locations and want to get involved, please contact sally.connick@fifthsense.org.uk.

Fifth Sense extends heartfelt thanks to Glynis, Terry, and Susan for organising the event and to Runway East and the National Lottery Community Fund for their support. Look out for more updates and events from the Birmingham Smell and Taste Action Group coming soon.

We’re thrilled to collaborate with Cadent, the UK’s largest Gas Distribution Network, to provide groundbreaking training for Cadent employees on smell and taste disorders.

A pioneering e-learning course will be offered to Cadent colleagues, with the goal of increasing important awareness of the impact of smell and taste disorders and help them to support those affected to stay safe in their homes.

The course forms part of a long-established strategic partnership between our two organisations, which began in 2019 to support the safety of people with smell disorders.

Duncan Boak, Fifth Sense CEO and Founder, said: “I’m delighted that Cadent is working with Fifth Sense to ensure its employees are aware of the potential safety issues associated with smell disorders. Safety is a big issue for someone with a smell impairment as they may be unable to detect gas, smoke, spoiled food and drink, and other potentially dangerous odours.

“Cadent is setting an example that I hope other organisations will start to follow. This is an important step in our ongoing fight for recognition of these sensory impairments.”

This new course gives Cadent colleagues – many who are gas engineers working within communities – information on smell and taste disorders, and how they can refer customers to additional support.

Phil Burrows, Head of Customer Vulnerability Social Programmes at Cadent, said: “This new e-learning course will provide vital information for our engineers and others who are out and about in the community visiting customers in their homes.

“Safety is a priority for us, and by raising awareness of the potential impact of not being able to smell a gas leak, we hope to decrease the likelihood of an incident.”

In addition, eligible customers can sign up to the Priority Services Register, the energy industry-wide register which supports those with health, communication, access or safety needs if their power, gas, or water goes off in an emergency – or because of planned works.

C-Jay Fretwell, Cadent Lead Gas Engineer, regularly works on emergencies and was part of the team that trialled the training.

C-Jay said: “I found the course helpful as I recently came across a customer who had totally lost their sense of smell from an illness. We had a chat about being able to detect gas and I could share some advice and tips to help them find a new nose, whether that’s a friend or neighbour, a gas detector or even prevention measures for gas escapes.

“Now all our engineers can do the same thanks to the training and initiatives coming from our partnership with Fifth Sense.”

Research suggests that as much as 5 per cent of the population may be affected by anosmia, the inability to detect odours. They can be congenital (since birth) or acquired following a head injury, viral infection, exposure to toxins, medication or an operational procedure, or due to an illness or condition such as stroke, Alzheimer’s or Parkinson’s.

Smell and taste disorders affect people’s physical and mental health, wellbeing and safety.

Duncan added, “Our sense of smell significantly impacts our memory, mood, and emotions and is integral to many enjoyable life experiences. It forms an essential sentimental pathway for creating meaningful and cherished memories.

“People with smell disorders often feel disconnected from the world and those around them, intensifying feelings of isolation and potentially leading to depression and anxiety.”

If you would like to know more about Cadent and its range of support options, you can visit their website here.

We had a fantastic weekend at the Dartmouth Food Festival, Devon, where we spoke to over 100 people keen to learn more about smell and taste disorders, the vital work Fifth Sense does and how they can access help from us, GPs, ENTs and smell and taste clinics.

There were several powerful conversations, with some members of the public acknowledging for the first time how much their disorder impacts their daily life and wellbeing, including one lady who hadn’t before considered the safety aspect of not being able to detect gas, fire and spoiled food.

We also spoke to several people whose loved ones are affected, helping them to begin conversations to encourage them to seek support, including a mum whose young daughter’s sense of smell had not recovered after having COVID several times.

It was also good to chat with a man who said he was pleased to see us as he was finding the festival difficult due to his altered sense of smell following a virus. He was glad to hear there is hope for improvement and support available, and is keen to attend the Birmingham Smell and Taste Action Group.

We want to thank the Food Festival for being such wonderful hosts, Fifth Sense volunteers Hannah Martin and Heather Morris for their support and for showing such kind empathy towards the visitors, and sommelier and wine educator Rebecca Mitchell, who kindly allowed us to share a stand and held a sensory wine tasting to raise money for Fifth Sense, with wine sponsored by LWC Drinks. Our final thank you is to perfumer Marianne Martin, whose smell kit was an engaging way to initiate conversations.

We are thrilled to announce that Rick Bolt, a passionate long-distance runner and Fifth Sense member, will take on the TCS London Marathon 2025 to increase awareness of smell and taste disorders and fundraise to support our vital work.

With nine marathons and an ultra-marathon under his belt, Rick is no stranger to fundraising via endurance challenges, having raised thousands of pounds for several charities he is passionate about previously.

For Rick, this is more than just another marathon; it’s a personal mission to advocate for a cause that directly affects his life.

In November 2021, he contracted COVID-19, which resulted in the sudden loss of his sense of smell and flavour/aromatic taste. His smell function remains severely diminished, and his ability to experience flavour has not returned.

This has had a profound impact on Rick, but he has never lost hope. Instead, he has sought out ways to stay physically and mentally strong, finding solace in exercise, nutrition, and even cold-water therapy, which has become a vital part of his routine.

Rick said: “It will be a privilege to run the TCS London Marathon in 2025 for Fifth Sense and raise much-needed funds and awareness for a charity that I follow closely, and which provides me with hope.

“I relish this opportunity and do myself and the charity proud.”

For Rick, this experience will not only be physically rewarding but will also give him the chance to shine a light on the amazing work happening in the field of smell and taste disorders.

He continued: “The London Marathon is the perfect platform to increase visibility, promote, and celebrate all the fantastic research and trial work that is happening. Hopefully, we can gain extra traction and perhaps secure charity places in future marathons.”

The TCS London Marathon takes place on Sunday 27 April 2025, with the iconic 26.2-mile course winding through the streets of London past landmarks such as Tower Bridge and Buckingham Palace, finishing on The Mall.

Keep an eye on Fifth Sense social media for updates from Rick as he begins training.

If you would like to donate towards Rick’s £1,000 target for Fifth Sense, please visit his Just Giving page.

Please join us in congratulating Rick and wishing him luck.

Can you support our vital work with a race or challenge?

Thank you to everyone who applied for our charity place for next year’s London Marathon. It was difficult to select just one from the applications we received.

Our incredible fundraisers help our charity’s vital work as we support people affected by smell and taste disorders and raise awareness of these unrecognised and marginalised issues.

We would like to create a team of people who are keen to fundraise for Fifth Sense through physical challenges, such as swimming, cycling, running or hiking, that we can contact if any opportunities arise.

Please email Sally Connick, Fifth Sense Community Development Officer, at sally.connick@fifthsense.org.uk if you would like to be added to the list.

If you are already signed up to complete a challenge, and you would like to raise money for Fifth Sense, you can set up a personalised fundraising platform using our Just Giving page.

We are forming a focus group for people with Chronic Rhinosinusitis with Nasal Polyps who are currently unable to get access to biologic drugs. Please sign up and join our fight for change.

A number of biologic medicines (drugs that are manufactured or synthesized from biological sources) have been proven to be effective in treating Chronic Rhinosinusitis with Nasal Polyps (CRSwNP), one of the biggest causes of smell loss.  But at present, people in the UK with severe cases of this condition for whom sinus surgery hasn’t helped are being denied access to these drugs. This is because the National Institute for Health and Care Excellence (NICE), the NHS and pharmaceutical companies have been unable to reach an agreement on a price for these drugs to treat CRSwNP, even though they are already being used in the UK to treat other conditions such as asthma.

We think this is unfair and that the system needs to change.  We’re committed to playing an active role in this, working with the NHS, NICE, pharmaceutical companies and policymakers, to ensure that people aren’t disadvantaged in future. We know from experience that people power can make a big difference, and that’s why we’re asking you to get involved and help in our fight for change. For more information on this issue, read our full statement below.

SIGN UP TO JOIN OUR FOCUS GROUP HERE

We are particularly looking for people with CRSwNP who:

• Have ongoing daily symptoms following sinus surgery
• Are on long-term oral steroids to help manage their condition
• Have Samters Triad/ Non-steroidal anti-inflammatory exacerbated respiratory disease

We’ll be inviting you to an event we are planning where you’ll have the opportunity to share the impact your condition has on your life and the challenges you have faced in getting effective treatment. Following this, there will be the opportunity to respond to surveys and provide ongoing input into our work on this issue with the above stakeholders.

Why is this important for people with smell and taste disorders caused by other health issues?

This issue has implications for all those of us affected by a smell or taste disorder. Increasing numbers of medicines are being used to treat more than one condition or disease, but NHS England’s current system for pricing medicines means that not all drugs get approved for all conditions/diseases. In future, we want more drugs to be developed to treat the different causes of smell and taste dysfunction, and we want to ensure that everyone in the UK who they might benefit is able to access them.  With the existing issues around access to biologic drugs for CRSwNP and the current consultation period on the NHS England Commercial Framework for New Medicines (see our full statement below for more details), we feel that the time is right to campaign for systemic changes which may benefit many more people in future.

Please note that while our current campaign is focused on patients in England, we welcome the involvement of people from Scotland, Wales, and Northern Ireland, as we hope that any outcomes will have a positive impact across the UK.

Improving access to multi-indication medicines: Fifth Sense statement

Fifth Sense wants people with smell and taste disorders to have fast access to specialist care and safe and effective treatments.  We also want a strong drug research and development landscape, and regulatory and pricing frameworks that will help enable new drugs to be developed to treat different causes of smell and taste dysfunction, sensory impairments for which effective treatments are lacking and much needed.

What are medicines with multiple indications?

Increasing numbers of medicines are used to treat multiple different health conditions or diseases. These are known as ‘multi-indication medicines’.

NHS pricing of medicines with multiple indications

The value of a medicine can vary between indications because of differences in the benefit it provides to patients, and also because of the different health burden and unmet needs of each health condition or disease, in addition to whether the medicine is used alone or in combination with another therapy.  Therefore, the ‘cost-effective’ price for the same medicine can vary across different indications.

The NHS states that it has a ‘uniform pricing policy’; it pays one price for a medicine, across indications.  The price agreed for the medicine for its first indication will therefore be the price set for further indications. This, combined with the variations in value as outlined above, can mean that medicines for other indications do not fall below the agreed NHS cost-effectiveness threshold.

NHS England’s Commercial Framework for New Medicines

NHS England is currently holding a consultation on its Commercial Framework for New Medicines. This sets out, amongst other things, the criteria under which the NHS will consider making indication-specific pricing arrangements for medicines.

Fifth Sense has made a submission to the phase 1 consultation on this.

How can the current framework be improved?

In our submission, we outline our view that the proposed criteria and the wider Commercial Framework in its current format does not deliver an effective pricing system for medicines with multiple indications that meet the needs of all NHS England patients.

The lack of flexibility in the current system is contributing to some medicines not being approved for some indications by NICE, the executive non-departmental public body in England of the Department of Health and Social Care (DHSC). This results in health inequalities for certain patient groups.

Additionally, we do not feel the criteria the NHS use in making indication-specific pricing arrangements is adequate. They are too focused on cost and do not take patient benefit into account. They also require data, which the NHS itself admits it does not adequately capture.

We feel that change in the system is needed in order to ensure that everyone can get access to treatments which offer benefits to them.

What is NICE’s role in making decisions about medicines?

NICE is responsible for appraising medicines and making recommendations on whether they should be adopted by the NHS.  NICE will undertake an appraisal for every indication a drug manufacturer applies for.  Part of the process involves trying to assess the potential benefit to patients and the cost-effectiveness of the medicine.

In early conversations between the company and NICE, it can become apparent that the medicine will not fall below NICE’s cost-effectiveness threshold for a particular indication. Whilst commercial agreements can be made (in ‘exceptional circumstances’, according to the NHS) there are certain criteria (set out within the Commercial Framework for New Medicines) that the medicine must meet for this to be an option. If these cannot be met, and the company and NHS cannot agree, then appraisals can be ‘terminated’ – the company does not continue with the appraisal process – and the medicine does not get approved for use in that indication.

Fifth Sense views on the Commercial Framework

We do not believe the NHS policy is as uniform as they state.

Multi-indication medicines are increasingly being developed – they made up 58% of total submissions to NICE between July 2016 and December 2023. Data from the DHSC showed that, since April 2020, NHS England has agreed to 37 commercial agreements that have resulted in “non-uniform pricing”. The NICE website provides an extensive list of the different drugs for which commercial arrangements have been agreed.

We believe that the Commercial Framework for New Medicines is not working for the following reasons:

• The number of commercial arrangements in place means that these bespoke agreements should not be considered ‘exceptional’
• Some patient groups are being disadvantaged by being unable to be prescribed medicines which offer benefits to them, such as the sub-group of patients with CRSwNP as outlined below.
• One of the criteria is that the indication must meet an ‘unmet clinical need’. However, nowhere in the Commercial Framework is there a definition of what constitutes an unmet clinical need. We would argue that the sub-group of patients with CRSwNP in our example below have an unmet clinical need, given that their circumstances mean that existing treatments are not providing a long-term solution to their problem.
• There is no specific mention of patient benefit; indeed, this term does not appear anywhere in the Commercial Framework. We feel that the current criteria fails to take into account the needs of patients, which should be at the front and centre of how the NHS operates, and that patient benefit must be assessed alongside commercial considerations in indication-specific pricing arrangements.

What this means for Fifth Sense and some of the people we represent

One group of people that Fifth Sense represents – those affected by CRSwNP, a major cause of smell loss – are currently unable to be prescribed a number of different biologic drugs. These are medicines for which there is evidence of efficacy in treating this chronic condition and that are approved for such use in other countries, but have not been approved for this indication by NICE, in most cases because the appraisal process was terminated.

These drugs are approved and being used to successfully treat patients with CRSwNP in other countries, but whilst they have been approved for use in some other indications, including asthma, they have not been approved for CRSwNP patients in the UK.

Some of the Ear, Nose and Throat Consultant Surgeons with whom Fifth Sense works tell us that of the sinus operations undertaken every year in England and Wales (between 20-30,000), around 10% will be for patients with the most challenging issues where surgery will provide only a short-term fix.

Such patients will have the worst symptoms and will typically present again with a recurrence of their symptoms, which may lead to repeat (and often ineffective) prescriptions of topical steroids, long-term prescriptions of oral steroids, (which cause side effects, including reduced bone density, high blood pressure and weight gain) or repeat sinus operations once symptoms become bad enough to necessitate this.

These are the people who stand to benefit the most from a biologic medicine, but their consultants are currently unable to prescribe these, unless individuals are also affected by moderate to severe asthma, in which case they could be prescribed a biologic by a Respiratory Consultant. Those patients with mild to moderate asthma, or no asthma at all, do not currently have this option available to them.

Additionally, some patients are unable to take oral steroids or are unsuitable for surgery, but a biologic drug is still not possible.

The action Fifth Sense wants to see, and what we’re going to do

As we’ve said, we want people living with impaired smell and taste to have fast access to specialist care and safe and effective treatments.  In this instance, we believe that biologic drugs should be available for clinicians to prescribe to this particular, and relatively small, group of patients with severe CRSwNP for whom there is no other treatment that has long-term effectiveness.

Other countries have clearly found ways to address this issue, given the number of other territories in which biologics are approved for use in patients with CRSwNP.

We want to see changes to the NHS Commercial Framework for New Medicines to deliver a more effective, transparent system for how multi-indication medicines are appraised and approved to ensure a much more equitable system that meets the needs of all NHS England patients.

We do recognise that the NHS has a difficult job in balancing the needs of patients with the need to deliver value for money for the taxpayer.  We also want pharmaceutical companies to be as flexible as possible in the pricing of their products to help ensure that all patients are able to access safe and effective treatments.  It’s a complex issue, and we’re committed to working with all relevant stakeholders – the NHS, NICE, ministers, pharmaceutical companies and other patient groups – to find a solution that, first and foremost, prevents patients from being disadvantaged in future.

How can you help us?

As a starting point, we are forming a focus group of people living with CRSwNP to support our campaign.

Focus group members will help us by sharing their experiences of CRSwNP, including challenges they have faced in getting support and effective treatment. We are planning to hold an event at which people will have the opportunity to share their experiences. Looking ahead, there will be further opportunities to help by responding to surveys and feeding into any engagement we have with the different stakeholders listed above. It won’t be a big commitment, and if you would prefer to share your views with us anonymously, then we can arrange for that to happen.

SIGN UP HERE TO JOIN THE FOCUS GROUP   

Fifth Sense was delighted to be part of the recent ‘Smell Above All: Where the Nose Meets Technology’ event, where over 100 people from around the globe celebrated the achievements of the Smell Care Project led by Prof Marianna Obrist and her team at University College London (UCL).

The event included discussions, live demonstrations, and key insights from participants, academics, clinicians, and industry partners.

The Smell Care Project

The Smell Care Project was a feasibility study to explore how participants engaged with a digital smell training device in their homes which they used in daily mindful smelling exercises.

This included people who had experienced smell loss and distortions.

Fifth Sense has been a partner on the project, providing ongoing input and support, including recruiting project participants, the majority of whom were Fifth Sense members.

The results of the study showed high levels of engagement, with 74% of participants remaining involved until the end of the trial period, some of whom reported that their sense of smell improved during this time.

Feedback from participants also showed that the device, developed by OW Smell Made Digital:

• Helped develop a smell testing routine that integrated into daily life
• Aided recovery by allowing progress to be tracked and improvements observed

Furthermore, participants felt that taking part in the project was important, given the relative lack of research into helping people living with these unrecognised and marginalised health issues.

The Smell Care project was funded by the Engineering and Physical Sciences Research Council (EPSRC) as part of UKRI and the National Institute of Health and Care Research (NIHR).

Fifth Sense and the Smell Care Project

Fifth Sense CEO and Founder, Duncan Boak, gave a talk at the event. Commenting on how the research findings can be used to influence key decision makers, he said: “The project has highlighted several ways in which routine smell training and monitoring has the potential to make a difference to people affected by olfactory dysfunction.

“This further confirms my belief that there is an urgent need for the NHS and policymakers to recognise the impact smell and taste disorders have, particularly to health, wellbeing and safety.”

Duncan went on to thank everyone involved for their valuable contributions, including Prof Marianna Obrist and her team at University College London (UCL) who Fifth Sense will continue working with to build on the success of the project.

Amongst the attendees was Fifth Sense volunteer, Ged, who lost his sense of smell following a head injury.

Ged supported our team on the day and engaged with delegates, sharing his experiences about the impact losing this sense has on him to enable professionals to better understand the challenges.

Find out more about the Smell Care Project here

Ten Fifth Sense Raising Awareness Volunteers attended our new online training, designed to support them in highlighting smell and taste disorders and smell safety in their local communities.

Thanks to National Lottery Community Fund funding, the volunteers will soon hold information sessions in settings such as GP surgeries, ENT clinics, organisations for older adults, head injury charities, and educational institutions like colleges and universities.

The online training sessions began with an introduction to Fifth Sense’s work and the various resources and support we offer. Participants then learned about different types of smell loss and distortions and explored the concepts of smell and taste versus flavour.

Emphasis was also placed on smell safety, with practical advice provided on how individuals can take simple steps to live safely. This work is part of our ongoing partnership with Cadent, promoting safety awareness.

To complete their training, the volunteers took part in small group discussions about our material and how to effectively present it to others. Several of the volunteers are personally affected by smell and taste disorders, and they were encouraged to share their experiences during their presentations.

Sally Connick, Fifth Sense Community Development Officer, said: “The feedback from the volunteers who attended the training has been overwhelmingly positive, and they are all eager to organise their initial sessions.

“They told us that they now feel much more confident about delivering their presentations and that the conversations they had during the training further equipped them with insights and knowledge.”

Can you help us raise awareness of smell and taste disorders?

As a small team, Fifth Sense relies on the support and dedication of volunteers across the UK to engage communities, extend our reach, and maximise impact.

By volunteering with Fifth Sense, you can make a significant difference in raising awareness and supporting those affected by smell and taste disorders. You can help increase understanding and drive positive change.

We have a variety of flexible, voluntary roles, some requiring just a few minutes of your time each week.

To find out more, email Sally Connick on volunteering@fifthsense.org.uk or visit the volunteering page on our website.

Wednesday, 17 July 2024, was a significant day for Fifth Sense as we launched our first Smell and Taste Action Group (STAG) in Birmingham.

The aim of STAGs is to enable people affected by smell and taste disorders to come together to:

• Share stories with like-minded individuals to give and get support
• Drive collective action towards a more inclusive society, with a specific focus on raising awareness about the impact of smell and taste disorders and the need for increased support
• Raise funds to support the group’s activities

The inaugural Birmingham event saw 18 people affected by smell and taste disorders come together with medical professionals from the Queen Elizabeth Hospital, Birmingham, and members of the Fifth Sense team.

Led by a team of seven volunteers who were supported by Fifth Sense, this event marked the start of our plans to build regional communities where discussions and information sharing can take place in a safe space with people who understand the challenges faced.

Sally Connick, Fifth Sense Community Development Officer, said: “I’d like to thank St. Philips Chambers for supporting this event by generously providing the meeting space and refreshments.

“I’d also like to thank our volunteers who gave up their time to arrange the meetup, reaching out to attendees from across the Midlands who joined us to begin building our first regional community.”

The event concluded with the group agreeing to hold further meet-ups, focusing on raising awareness and collectively tackling the lack of understanding from some medical professionals, an area the group is passionate about.

Feedback from the group was positive, with one attendee commenting, “I was made to feel very welcome, and for once not treated like a nuisance or just someone who’s moaning!”

Next steps for Fifth Sense STAGs

Thanks to a grant from The National Lottery Community Fund, the Birmingham group is the first of many Fifth Sense plans to launch.

We have received interest in setting up STAGs from other areas of the country, including Watford and Northampton, so please join Fifth Sense for the latest updates.

If you’d like to volunteer to set up a group in your local area, with support from Fifth Sense, please take a look here or email Sally Connick at volunteering@fifthsense.org.uk for more information.