Introduction
Background and rationale
Smell is the forgotten sense; even when facing a problem with their
sense of smell, patients often struggle to get recognition, let alone
diagnosis or treatment from healthcare professionals. Olfactory
disorders are as common as profound hearing loss and blindness affecting
an estimated 5% of the population1. Common causes of
olfactory disorders include chronic rhinosinusitis, post-viral olfactory
loss and post-traumatic olfactory loss2 as well as it
being present in the majority of cases of Parkinson’s disease and common
in Alzheimer’s disease. We are now also witnessing the rise of sudden
onset anosmia as a marker of Covid-19 coronavirus
infection3-9. It remains to be seen how many new cases
of lasting olfactory loss will arise from those afflicted by the
pandemic.
Recent population studies have now identified anosmia as an independent
risk factor for shortened longevity, even after controlling for dementia
and cardiovascular disease10-13. It is not clear why
this is so but may suggest that the olfactory system acts as a barometer
of environmental impact on the central nervous system as a whole. As
this phenomenon has been observed in several countries it clearly
demonstrates that olfactory disorders deserve to receive greater
attention than they currently do.
Taste is often thought to be lost by those affected by olfactory
disorders due to the misperception of retronasal olfaction as a
“taste” sensation. In reality only a small percentage of people
reporting a problem with their sense of smell or taste experience a true
gustatory disorder, but due to this common misperception alongside the
need to be representative of all patients with chemosensory disorders,
it is always important to encapsulate both senses within any work of
this kind.
Fifth Sense, the UK charity for people affected by smell and taste
disorders, was founded in 2012 when authors DB and CP met and agreed on
the need for patient advocacy to tackle the unmet needs of patients
affected by olfactory disorders. Since then, with the help of a growing
membership, we have been able to characterise the significant impact of
olfactory disorders on those affected14,15 and we have
also become aware of the frustrations many members in their dealings
with the medical profession and getting their sensory loss taken
seriously15-17. In 2019, Fifth Sense was awarded a
National Lottery Grant for £238,815 to enable it to develop and grow its
work, including the establishment of a network of patient support hubs.
Objectives
Following on from the above, this study aimed to characterise the
details of the difficulties faced by patients with olfactory disorders
in accessing healthcare as a patient and public
co-production18. This will help us jointly address
these issues through the work of the National Lottery Grant in
2020-2023.