Working with Fifth Sense to help support people living with smell disorders

We’re working with Fifth Sense on a new project to increase awareness of the essential role that our senses of smell and taste play in our health, wellbeing and safety, and enable people with a poor, altered or no sense of smell to stay safe and well at home.

Our sense of smell is our body’s main early warning system for detecting dangers such as gas, smoke or spoiled food, but we often take it for granted.  Having a smell disorder makes people vulnerable to these dangers, yet there is a real lack of awareness of this issue across society and many of those who contact Fifth Sense tell them they’re not given information to support their safety and wellbeing by doctors. Research has shown that as much as 5% of the population has significant olfactory impairment, yet people aren’t always aware that they have a poor sense of smell and routine testing is not undertaken, unlike for sight and hearing.

The results of the Fifth Sense SmellSafety survey, due to be published in Spring 2023, has highlighted that a majority of people with a smell disorder, including those living with ongoing post-Covid smell dysfunction, have concerns about their safety. Of greater concern is the significant proportion of respondents who have had safety scares at home involving gas.  We’ve heard from Fifth Sense members who have been alerted to gas leaks that they were unable to smell by neighbours; someone with post-Covid parosmia who could detect a ‘damp’ smell in the kitchen that turned out to be leaking gas; family members coming home to gas-filled kitchens after cookers or hobs have gone out.  Running through all these stories is the worry and anxiety this causes; people tell us that their fears of being unable to smell leaking gas, or smoke from a fire, contribute to poorer mental health.  ‘The monster in the kitchen’ is how one person described their fear of undertaking the everyday task of cooking dinner.

It’s clear there is a significant issue here in terms of both vulnerability to dangers and the impact on mental health that has previously been given little consideration. However, there are simple steps that people can take to stay safe at home, with awareness of the issue and of one’s own smelling ability being a key starting point.  We are working with Fifth Sense to help address this issue.

The three-year project will encompass a significant body of activity, with the delivery of support, information and education at its core. Fifth Sense will develop and grow their support and information service and deliver a programme of professional education and public engagement to increase understanding of the wide-ranging impact of smell and taste disorders and how people can live safely and well with their condition.  As part of this Fifth Sense will reach out and engage with people from communities who may benefit the most from this safety information.  We also want to ensure that low-cost natural gas detectors become readily available and routinely used in the same way as smoke and carbon monoxide detectors.

We’ve been working with Fifth Sense since 2019, and the award of this funding marks a significant step forward in recognition of the life-changing impact that smell impairment has on people’s health, wellbeing and safety by a major organisation that plays an important role in supporting people in vulnerable situations across the UK.

Fifth Sense Chief Executive and founder Duncan Boak said “This is an incredibly significant development for our charity, cause and the people we represent. We rely on their sense of smell to detect dangers, and it plays a huge role in our health and wellbeing, yet people experiencing problems with it are often ignored and marginalised. This new project will enable us to increase recognition amongst public and professionals and get vital support and information to help those affected stay safe and well at home”.

Emma Turnbull, Safeguarding and Community Partnership lead at Cadent said “We are really excited about partnering with Fifth Sense and working collaboratively on raising awareness of smell disorders. The project will enable us to educate Cadent colleagues and customers to ensure we are supporting people that struggle with this sensory impairment. It is vital that we support all our customers and keep them safe and independent in their homes”.

Fifth Sense members who have already benefitted from their information and support have described it as ‘life-changing’. Hannah lost her sense of smell in 2011 following a virus and it has not returned.  She had her own safety scare when the gas grill she was using went out without her realising.  It was her mum, running down the stairs after smelling the gas, who ventilated the room and prevented disaster occurring. Since then, with the support of Fifth Sense, Hannah and her family have taken steps to keep herself safe.

“I felt horrified when this happened. We have a household of five people on each side of us and there would’ve been no way to warn them at the time. The thought of blowing up the kitchen and injuring all those innocent people absolutely terrified me.

By finding Fifth Sense, reading their safety Information and my dad diligently ordering the detectors which would not only keep me safe, but everyone in our household, it helped to improve my confidence. It has enabled me to move something to my ‘I can do this on my own independently and safely list’ and there is no feeling like it in the world”.