SmellTaste is pleased to be offering free education sessions on the management and treatment of Allergic Rhinitis (AR) for ear, nose, and throat (ENT) teams across England.

These sessions will cover the latest available treatments and the effectiveness of referral pathways across England. Additionally, we will discuss the impact that AR can have on our senses of smell and taste.

We invite ENT professionals to join us at our online launch event on Wednesday 23 July from 6.30pm to 7.30pm. The event, held using Microsoft Teams, will be a valuable opportunity to:

• Learn more about the sessions
• Hear from Professor Stephen Durham and Professor Carl Philpott who will be discussing AR from their specialisms’ perspective, including a discussion of the pathway for AR and any overlap between ENT and allergy and immunology services
• Ask Prof. Durham and Prof. Philpott questions

These sessions form part of our ongoing efforts to engage with and educate ENT professionals. ALK has generously sponsored these sessions, but they have no influence on the agenda, or the content presented.

For more information or to book your virtual place, please contact Helen Rhodes,  helen.rhodes@smelltaste.org.uk

The review of the Voluntary Scheme for Branded Medicines Pricing and Access (VPAG), expected in Autumn 2025, has been brought forward and is due to conclude at the end of June 2025.

The Charities Medicines Access Coalition (CMAC), a coalition of 26 health charities (including SmellTaste) representing millions of patients across the UK, is calling for the Government and the pharmaceutical industry to be more transparent and share clear evidence that patient impact is at the heart of the ongoing VPAG discussions and negotiations.

• The Government must ensure all options being discussed for reform within the VPAG scheme are formally assessed for their impact on NHS patients.
• The Government and the pharmaceutical industry must also increase their communication and open meaningful discussions with patient organisations within this review.

This statement is supported by the following CMAC members: Action Bladder, Action for Pulmonary Fibrosis, Alzheimer’s Research UK, Breast Cancer Now, Blood Cancer Alliance, The Brain Tumour Charity, Brain Tumour Research, Cancer Research UK, Cancer 52, Cardiomyopathy UK, Cystic Fibrosis Trust, Diabetes UK, Genetic Alliance UK, JDRF UK, Kidney Research UK, Leukaemia UK, Make 2nds count, METUP UK, MNDA Association, MS Society, Myeloma UK, Neurological Alliance, Prostate Cancer UK, Retina UK, SmellTaste, Spinal Muscular Atrophy UK.

Voluntary Scheme for Branded Medicines Pricing and Access (VPAG) accelerated review – Charity Statement

The Charities Medicines Access Coalition (CMAC), a coalition of 26 health charities representing millions of patients across the UK, is calling for the Government and the pharmaceutical industry to be more transparent and share clear evidence that patient impact is at the heart of the ongoing VPAG discussions and negotiations.

The review of the Voluntary Scheme for Branded Medicines Pricing and Access (VPAG), expected in Autumn 2025, has been brought forward and is due to conclude at the end of June 2025.

During the last round of negotiations, CMAC was clear that there must be meaningful engagement with patients and the groups that represent them, transparency around the process, and a joined-up approach to consult with stakeholders on patient-focused topics, including access, uptake, and outcomes. These negotiations and subsequent decisions will have a tangible impact on outcomes for the patient communities we work with.

Neither CMAC nor any of the individual patient organisations we represent have been consulted during this review process. This exclusion of patient voices only deepens our concern that patient benefit and access to effective treatments are not being treated as priorities in the Government’s negotiations with the pharmaceutical industry.

There is also a lack of transparency as to which elements of the VPAG scheme are being considered for amendment within this early review. This makes it challenging to understand or assess the impact that proposed revisions to the scheme may have on patients.

Whilst we would not expect to be involved in the confidential financial negotiations between the Government and the pharmaceutical industry, as patient representatives, we should be included in discussions around how VPAG funds are used to improve patient outcomes in the UK.

We are calling on the Government to ensure all options being discussed for reform within the VPAG scheme are formally assessed for their impact on NHS patients. We also call on the Government and the pharmaceutical industry to increase their communication and open meaningful discussions with patient organisations within this review.

Future work on the VPAG scheme, or any other proposal for reform of the UK’s treatment access systems and processes, must be fully inclusive of the patient voice and ultimately lead to faster, equitable access to new, innovative medicines.

Celebrating its 14th year in 2025, Thursday 27 February is Anosmia Awareness Day.

A mainstay on the SmellTaste calendar, this annual event serves as a catalyst for raising awareness about smell and taste disorders, an area in which SmellTaste is making significant progress, but there is still much work to be done.

For 2025, SmellTaste’s Anosmia Awareness Day social media campaign focuses on some of the main issues around smell dysfunction. These are:

• Anosmia, both congenital and acquired, and other smell and taste disorders are widely under-recognised
• Smell loss can be an early indicator of serious conditions
• Mental health can be seriously impacted by smell disorders
• A high number of people with a traumatic brain injury experience smell loss
• People with impaired smell can take simple and often free measures to stay safe at home

For SmellTaste, last year’s Anosmia Awareness Day was the biggest yet, with several partners getting on board and posting on social media to drive the conversation further.

This year we hope even more people will be inspired to support us to increase our reach, raising awareness of these under-recognised conditions and spreading the word that SmellTaste supports and represents anyone affected by a smell or taste disorder.

Please keep an eye on our social media channels on Thursday 27 February and engage with any content using the hashtag #AnosmiaAwarenessDay

The more people who support our campaign with a simple post, like, comment or share on social media, the further our vital messages will be amplified and the more we can push to get smell and taste dysfunction the recognition it needs.

Join us on Wednesday 26 February for the inaugural BeCOH webinar

SmellTaste is a founding member of the Breakthrough Consortium for Olfactory Health (BeCOH), which aims to advance the prevention, detection, and treatment of olfactory dysfunction. Register here for their introductory webinar on Wednesday 26 February. Don’t worry if you can’t attend. The webinar will be recorded and shared on our social media channels and via email to our members.

Other ways to help SmellTaste

This year, we launched our most ambitious campaign yet to raise £50,000 through a range of community-led fundraising activities that do more than just raise funds. Find out how you can join in 50 Ways to Raise 50K here.

You can also support SmellTaste by becoming a volunteer. We have a range of roles available, some taking a just few minutes of your time each week. To find out more, visit our website or email sally.connick@fifthsense.org.uk

Do you or someone you know have problems with your sense of smell and/or taste?

If you would like support or information about anosmia and other smell and taste disorders, visit our website where you can find support and resources and information sheets and support videos.

We also host online and in-person support groups where you can talk to others who understand what you are going through, share tips and advice, and build connections in a supportive environment. Please join for free as a SmellTaste member for information on our events, as well as updates on our work and more.

If you would like further support or information, you can email us at info@fifthsense.org.uk

There has been recent media coverage about the potential for Platelet Rich Plasma (PRP) injections as a new way of treating smell loss. 

Platelet‐rich plasma (PRP) is derived from fresh whole blood containing a high concentration of platelets. The blood is taken from the individual receiving the treatment.  The PRP is then injected into the individual’s olfactory cleft. PRP has been explored as a potential treatment for other conditions, including arthritis.

Several research studies have been published where people with different forms of olfactory dysfunction have received a number of PRP injections over the course of several months.  Some of the people involved in the studies experienced improvements in their sense of smell, as measured by a clinically validated smell test, whilst some experienced no improvement.

At this stage, PRP injections are an experimental treatment for olfactory dysfunction that has not been approved by NICE to treat NHS patients. The studies that have been undertaken so far show that PRP may offer potential benefit to some patients affected by olfactory loss, but that more work is needed, including double-blind randomized controlled trials involving larger numbers of patients, to get a better understanding of what benefits PRP may offer, and to which patient groups.

The recent media coverage focuses on one individual who has received one injection of Platelet Rich Plasma (PRP) from an ENT Consultant in London.  Typically a randomised control trial would involve dozens of patients, and would assess ability to smell before and after treatment. It is unclear in this case whether a smell test was undertaken before or after the injection in order to establish the magnitude of any perceived effect.

SmellTaste supports research into better understanding the causes of olfactory dysfunction and finding new treatments.  We want to see new treatments made available to patients on the NHS as soon as possible, with these having been evaluated in clinical trials, the gold standard being double-blind randomized controlled trials.

Details of two published papers on PRP for olfactory loss:

Use of platelet-rich plasma for COVID-19–related olfactory loss: a randomized controlled trial

https://doi.org/10.1002/alr.23116  This was an initial study involving 35 people affected by post-Covid smell dysfunction, 26 of whom completed the study

Long-term Outcomes of PRP Injections for Post-viral Olfactory Loss: A Prospective Cohort Study

https://doi.org/10.1002/alr.23505

SmellTaste 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 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 SmellTaste 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.

SmellTaste 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.