People who have lost their sense of smell are being failed by healthcare professionals according to new research from the University of East Anglia, Newcastle University and smell loss charity Fifth Sense.
A new study published today reveals poor levels of understanding and care from GPs and specialists about smell and taste loss, experienced by many patients.
The study highlights the difficulties that people with smell and taste disorders experience in accessing treatment.
The research team say that identifying these barriers is vital to help people have better access to healthcare.
Lead researcher Prof Carl Philpott, from UEA’s Norwich Medical School, said: “Before the pandemic, smell disorders affected around five per cent of the population. But the huge rise in smell loss caused by Covid-19 has created an unprecedented worldwide demand for treatment.
“Smell disorders cause people to lose their sense of smell or change the way they perceive odours. Some people perceive smells that aren’t there at all.
“Around one in ten people who experience smell loss as a result of Covid-19 report that their sense of smell has not returned to normal four weeks after falling ill. But there are many other causes for smell loss too – from infections and injury to neurological diseases such as Alzheimer’s and as a side effect of some medications.
“Losing your sense of smell has big life impacts. People can become depressed, suffer anxiety about personal hygiene, lose or gain weight, and have relationship difficulties – and one big problem is around hazard perception, for example not being able to smell food that has gone off.
“It’s absolutely vital that patients have access to the right treatment and healthcare, so we wanted to find out more about the experiences of people with smell loss when they try to access healthcare.”
More than 600 smell loss patients took part in a survey which captured their poor experiences of accessing healthcare.
The survey also highlights poor levels of understanding from many GPs and consultants (both in Neurology and Ear, Nose and Throat departments) about the impact of smell and taste disorders on patients.
Prof Philpott said: “This research shows that more than one-third of GPs failed to recognise smell loss as a problem for the patient and when a patient was referred to a specialist, more than half of neurologists also failed to recognise smell loss as issue.
“More than 60 per cent of patients in the study reported suffering from anxiety or depression since their smell loss. And almost all of the patients – 98 per cent - said their quality of life has been affected.
“Worryingly only around 20 per cent of patients reported that that they had experienced an improvement in their symptoms following treatment.”
This research was conducted before the Covid-19 pandemic but it identifies many areas that were consistent across multiple experiences.
Further issues reported included repeated ineffective treatments, difficulties getting referrals for further care, and an average personal cost of £421 seeking advice and treatment.
Prof Philpott said: “This research shows that there is an unmet need for smell loss patients in accessing health care and a clear need to improve training within healthcare to remove the barriers faced by patients.
“On a positive note, Fifth Sense is leading a Priority Setting Partnership for research into smell and taste disorders that will help to set out a top ten list of research priorities.”
Duncan Boak, Founder and Chair of Fifth Sense, said: “Smell loss can have a huge impact on people’s quality of life in many ways. An important part of Fifth Sense’s work is giving our beneficiaries a voice and the opportunity to change the way society understands smell and taste disorders, whether through volunteering or participating in research studies like this one. The results of this study will be a big help in our ongoing work to improve the lives of those affected by anosmia.”
‘Barriers to effective health care for patients who have smell or taste disorders’ is published in the journal Clinical Otolaryngology.