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.

Fifth Sense recently had its most significant public engagement opportunity to date through a collaboration on The Making Sense Garden at the RHS Hampton Court Palace Garden Festival.

Garden designers Flora Scouarnec and Vickie Pease-Cox, from Scouarnec and Pease Cox Garden Design approached Fifth Sense to discuss their plans to create a garden that highlighted the challenges of smell impairment. They discovered us during their research and were so inspired by our touching personal stories and forward-thinking work that they asked us to get involved.

This collaboration gave Fifth Sense a vital chance to raise awareness of smell and taste disorders with visitors to the festival.

Fifth Sense CEO and Founder, Duncan Boak, said: “The Making Sense Garden represented a valuable opportunity for Fifth Sense and our cause. I can’t thank Vickie and Flora enough for their efforts to increase recognition for people with smell and taste disorders.”

Their design was carefully considered, with textured plants and trees, sounds from a water feature and a crunchy gravel path, and lush planting for a stunning visual impact.

The lower part of the garden was a relaxing space where people with smell and taste disorders could enjoy the sights and sounds around them.

Adjacent to the garden was our stand where members of the Fifth Sense team and volunteers welcomed visitors who participated in interactive activities related to smell and taste.

The Making Sense Garden was awarded a prestigious silver medal, an achievement made even more thrilling for Vickie and Flora as this was their first-ever show garden.

It also scooped the RHS People’s Choice Award for the best garden in the Get Started category, an award voted for by members of the public.

The garden was featured on a special Gardener’s World programme. Presenters Amit Anderson and Nick Bailey commented there was a lot to like about the garden, including how the sunken level lured them in like a warm embrace.

To celebrate the garden, Fifth Sense held a fundraising event at The Mitre Hotel, Hampton Court.

Invited guests were able to hear about the garden, listen to a talk from BBC Radio 4 presenter Kathy Clugston, take part in wine tasting from the perspective of someone with a smell disorder, and witness the launch of Making Sense, a perfume created using flowers found in the garden.

The evening included a raffle, where £1,000 was raised. We would like to thank the following for generously donating raffle prizes:

• The Mitre Hotel, Hampton Court
• NC Coaching
• ISEL Digital
• Soul Space
• Tabby Tiger
• T. Winter Accounting Services
• Becky Street
• Wales Perfumery
• Hallgarten Wines
• Scouarnec and Pease Cox Garden Design

Duncan added, “I’d also like to say a big thank you to the Mitre Hotel for hosting our event, Hallgarten Wines who donated the wines for the tasting, Sarah McCartney from 4160 Tuesdays for creating the Making Sense perfume and our partners FlavorActiV for supporting our activities at the event. Lastly, I’d like to thank our fantastic volunteers who gave up their time to support us and everyone who visited the garden.”

Find out more about the garden, including a full plant list, here.

Clinicians and researchers interested in olfaction, gustation and chemosensory disorders attended our two-day Symposium on Smell and Taste Disorders, which also hosted a forum exclusively for Fifth Sense members.

Held at The University of East Anglia (UEA), Norwich, the Symposium offered the opportunity to learn from expert speakers and Fifth Sense members with lived experience, attend practical workshops, and hear about the latest research and treatments in smell and taste disorders.

Fifth Sense volunteers Glynis Coleby and Hannah Martin opened the event. They shared personal stories about living with smell and taste disorders. Their talks were powerful reminders of the impact of such conditions, with both emphasising how wellbeing and mental health are affected.

Glynis and Hannah finished their session by answering questions posed by the professionals present, who were keen to know more about their experiences. Several commented on how important it was to hear real-life stories.

We want to thank Glynis and Hannah for their support at this event.

Members’ Forum

The final day saw six Fifth Sense members attend our forum, five living with a smell and/or taste disorder and the partner of a person affected.

Zhu Hui Yeap, a Clinical Research Fellow at UEA, and Dr Nicole Yang, an Associate Professor in Flavour Science from the University of Nottingham, were also present.

The Forum began with members of the Fifth Sense team giving an update on their areas of work:

• Helen Rhodes, Engagement and Education Officer, spoke about her work, including the project funded by Cadent that raises awareness of gas safety
• Sally Connick, Community Development Officer, explained the different voluntary opportunities that are available with Fifth Sense and how people can get involved. Her talk included an outline of the new Smell and Taste Action Groups. Funded by the National Lottery Community Fund, these volunteer-led groups focus on raising awareness and facilitating peer support for those affected by smell and taste disorders
• Sarah Pearce, Director of Services and Operations, outlined the work that Fifth Sense are doing. She also provided a summary of the Symposium and talked positively about the energy and commitment from researchers and medical professionals to improve the lives of people living with smell and taste disorders

Members were then able to share their stories. Each one was different, but all were met with comfort and understanding.

The Forum concluded with Zhu Hui Yeap and Dr Nicole Yang giving an update on their work. The group then had the opportunity to trial Dr Yang’s specially developed flavoured gum.

We’d like to thank everyone who attended, spoke at or facilitated the Symposium and the Members’ Forum. It’s an important day in the Fifth Sense calendar as we continue fighting to transform the lives of those affected by smell and taste disorders.

Fifth Sense is proud to be a member of the Community Rehabilitation Alliance (CRA). The alliance comprises more than 60 charities and professional bodies who are all committed to improving commissioning, planning and delivery of rehabilitation.

It is in this shared endeavour that we have signed the letter below which has been sent to each of the three political party leaders clearly setting out why it is vital that the next government must prioritise and invest in community rehabilitation services.

CRA Letter to the Labour Party May2024

The alliance’s priorities are:

• to gain political commitment to delivering universal access to rehabilitation to meet needs
• to improve the quality of rehabilitation through new models, better data collection, planning, commissioning and delivery of services.

Fifth Sense strongly believes in the right to rehabilitation for all those who need it, and for smell and taste impairment to be universally assessed, recognised and supported in rehabilitation.

We are pleased to share further details of the Making Sense Garden being exhibited at this year’s RHS Hampton Court Palace Garden Festival.

A collaboration between Fifth Sense and Scouarnec and Pease-Cox Garden Design, the garden will enhance the senses of touch, hearing and sight with captivating textures, colours, shapes, and sounds across two levels.

The upper level will be planted with brightly coloured, tactile flowers from the Fifth Sense palette. It includes a gently curving, crunchy gravel path that leads to a tranquil sunken garden on the lower level.

The lower area will emulate a comfortable space for people affected by smell and taste disorders. It’s a place where they could relax, talk, and enjoy the sights and sounds around them. The area will feature a log bench shaded by a tree, a simple water feature and two beautiful multi-stemmed trees with tactile bark to frame the view. Stone palisades will create a striking focal point amidst the lush planting.

Duncan Boak, CEO and Founder of Fifth Sense, said: “The loss of, or changes to, the sense of smell significantly impacts people’s physical and mental health as well as their ability to appreciate fragrances and their gardens.

“Inspired by these challenges, Flora Scouarnec and Victoria Pease-Cox are creating the Making Sense Garden. We’re grateful to them for this valuable opportunity to increase awareness of the vital role that smell plays in connecting us to our outdoor spaces.”

Visitors can learn more about the garden and participate in interactive activities related to smell and taste at the adjacent activation zone managed by Fifth Sense.

Visit the Making Sense Garden

The RHS Hampton Court Palace Garden Festival runs from Tuesday, 02 July to Sunday, 07 July 2024, with the first two days being for RHS members only.

As well as viewing the gardens, visitors can enjoy talks and demonstrations, music, shopping, food and drink and family activities. Find out more here.

Fifth Sense is delighted to collaborate with Scouarnec and Pease-Cox Garden Design on a garden that will be exhibited at the RHS Hampton Court Palace Garden Festival.

Designed by Flora Scouarnec and Victoria Pease-Cox, the garden will prioritise the senses of sight, touch and sound whilst making people more aware of the vital role that smell plays in connecting us to our gardens and other outdoor spaces.

Flora and Victoria said: “We are delighted to be designing a garden at Hampton Court this year. We wanted to create a sensory garden to specifically highlight the challenges of smell impairment for this year’s show and to make people more aware of how important all the senses are when enjoying gardens.

“Whilst doing our research, we learned of Fifth Sense. We were so inspired by the touching personal stories and the forward-thinking work the charity is doing. We are delighted to be working with Duncan and his team to raise awareness of the charity’s work through our garden.”

Adjacent to the garden will be a space where visitors can learn more about the garden and Fifth Sense will run a range of interactive activities relating to smell and taste. 

Duncan Boak, Fifth Sense CEO and founder, said: “We are thrilled to be involved in this project and have the chance to raise awareness of smell and taste disorders with a new audience in such an engaging way. This represents a wonderful opportunity for our charity, and I’m grateful to Flora and Victoria for reaching out to Fifth Sense and asking us to be involved. We can’t wait to see the completed garden and welcome visitors.”

The RHS Hampton Court Palace Garden Festival is open to members of the public from Tuesday, 02 July to Sunday, 07 July 2024. 

Find out more about ‘The Making Sense Garden’ and look out for more information in the coming months.

Important new research undertaken by Fifth Sense and the University of East Anglia has highlighted the significant safety implications of living with a poor, altered or no sense of smell.

The paper is based on the findings of an online survey conducted by Fifth Sense which captured the safety concerns of people affected by smell dysfunction. It also asked for details of gas and food-related safety incidents people have been exposed to at home and work.

Duncan Boak, CEO of Fifth Sense, said: “This research highlights an important, yet unrecognised, public health issue with serious safety implications. Yet there is a lack of treatment options for these sensory impairments and only a handful of specialist smell and taste clinics in England, with none in Scotland, Wales or Northern Ireland.

“Another issue is that we don’t routinely test the sense of smell which means that these problems often get missed with people not getting the care they need, or support and information to help them stay safe at home. I hope that our research serves as a prompt for policymakers and the NHS to start working with us to address what is a major health inequality.”

Notably, the paper states that 34% of people with a smell disorder have had at least one gas scare at home in the last five years.

Fifth Sense is working in partnership with Cadent, the UK’s largest gas distribution network, to highlight this issue and ensure that people with a poor, altered or no sense of smell have the information and support they need to stay safe and well at home.

Mark Belmega, Director of Social Purpose and Sustainability at Cadent, said: “It’s really important that we help keep those with anosmia and other smell disorders, safe around gas.

“We know cases have increased following the Covid-19 pandemic and so we’re proud to work in collaboration with Fifth Sense to amplify key gas safety tips, including regularly servicing gas appliances, joining the Priority Services Register and getting gas and CO detectors fitted at home.”

Over 400 people completed the survey, with further results showing:

• 85.9% of respondents cited safety concerns, and gas, smoke, and food are major concerns
• The leading causes of dysfunction are:
  • 22% – Covid-19
  • 20.8% – Idiopathic (patients in whom after extensive testing no cause for the loss of sense of smell is found)
  • 14.4% – Congenital (the inability to smell since birth)

The study also highlighted the significant impact of smell loss on emotional wellbeing, which Fifth Sense assists with through regular support groups, website resources, community hubs and more. The paper also recommends routine olfactory assessments to identify at-risk people and provide an opportunity for preventative measures to be put in place to keep people safe.

Fifth Sense will use the findings in ongoing campaigns to raise awareness of the impact of smell impairment on safety and wellbeing, advocate for improved support and guidance for those affected, and campaign for better recognition and testing.

Fifth Sense thanks everyone who completed the survey. You can read more about the study.