Discussion

Key results

Our study serves to illustrate a number of significant issues faced by patients with chemosensory disorders. Firstly, a lack of recognition in the wider medical profession but still with 1 in 4 ENT specialists failing to convince their patients that they appreciated the impact of their olfactory disorder; this was even more noticeable in over half of neurologists encountered. In fact, it is evident that the experience of this patient group with neurologists was largely disappointing. Secondly, knowledge of appropriate treatments is lacking thus leading to no treatment or to repeated ineffective treatments being applied. This was further exacerbated by participants expressing little satisfaction with the usefulness of the advice given. Thirdly, accessing a specialist consultation was a challenge with 1 in 4 reporting difficulty in getting a referral. Due to the paucity of specialists dedicated to chemosensory disorders, respondents reported significant journeys and costs associated with that. Finally, mental health aspects of being affected by chemosensory disorders have been clearly highlighted and 15% reported taking prescribed medication for this, therefore also emphasising an additional healthcare burden.

Limitations

The survey will not have been seen by those who are not online or do not have access to the aforementioned social media. This is likely to have disproportionately affect the older generations. Due to the origin of the survey in the UK and with Fifth Sense being a UK based charity, over two thirds of the respondents reflect their experience with the National Health Service setting in the UK. It is also possible that an unknown number of patients may have had a good response to treatment, but these cases will not be apparent if they are not Fifth Sense members or have chosen not to respond to the survey because they were happy with the outcome of their treatment. It may also be that the treatments applied were reasonable, but nonetheless proved ineffective in resolving or improving the olfactory disorder. The charity membership and survey respondents will also tend to be more likely to be those who have persistent symptoms and thus are more difficult to treat.

Interpretation

The demographics and aetiology of study participants was in keeping with the typical female predominance seen in other studies and with sinonasal disease and post-viral olfactory loss as leading causes19-22. The study also underlines the mental health impact of previous studies in those with olfactory disorders14,15,19. However, this study makes a clear reflection on the paucity of services provided to this patient group and shows that the relatively poor engagement by the medical profession has changed little in nearly two decades23. Our data would suggest this is clearly an issue in the UK healthcare setting, but international responses also suggest this is potentially a global issue with little emphasis placed on either the importance of these senses in everyday life or the consequences of losing them.

Generalisability

There is an unmet need for patients with olfactory disorders in accessing healthcare including engagement from the medical profession and signposting to appropriate information and treatment options. It remains to be seen as to whether the current wave of Covid-19 related smell loss as a result of the global pandemic will give rise to an increase in patients presenting with post-viral olfactory loss but with an estimated rate of anosmia globally of 5% and hyposmia up to 20%, these disorders are common and engagement from the medical profession is not matching this. This underlines the raison d’être of Fifth Sense which amongst its strategic aims is the need to improve education of the role of these senses in everyday life as well as providing support for those affected by these disorders. To move this forward, Fifth Sense plans to work with the medical profession to not only provide patient support, but also to work with the wider body of stakeholders that need to be engaged in improving the current situation faced by these patients in accessing suitable care, including appropriate psychological support.