Duncan shares his reflections on the discussion and why collaboration between patients and clinicians is so important.

In a recent international patient survey undertaken by Fifth Sense and the University of Anglia*, 71% of respondents said that impaired smell was the most significant symptom of CRSwNP. The level of satisfaction with the management of smell and taste disturbance by doctors was lower compared to management of the condition overall.  The results showed major variations in care, but also demonstrated the difference that can be made to people’s lives by the right treatment plan with the support of a specialist who listens and cares.

These findings were very much echoed in the filmed panel discussion I was part of this week organised by the European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA), who created the CRSwNP awareness day. In the discussion I highlighted the need for doctors to recognise the significant impact that smell loss has on so many aspects of people’s lives and physical and mental health, and do their utmost to support and treat patients.

We heard powerful testimonies from Chabha, Daisy and Natasha on their personal experience of CRSwNP and how losing their sense of smell affected their lives.  What came through clearly from their stories was the importance of early diagnosis and being given the right treatment.  Chabha was seen by a specialist quickly, and ultimately was prescribed a treatment that has restored her sense of smell.  By contrast, both Daisy and Natasha both had to wait several years before they were seen by an ENT specialist.

GPs often act as gatekeepers, by enabling patients’ access to specialist care. However, we know that many people do not always get the timely referral or adequate support to help them manage their condition. Our Barriers to Effective Healthcare for People with Smell and Taste Disorders study showed that people can sometimes get stuck in a cycle of repeat visits to their GP without being given a referral or effective treatment.  But sometimes people don’t get effective treatment even after referral to a specialist.  There are many reasons for this; CRSwNP is a complex condition that is not easy to treat. But there are variations in how patients are treated and managed, something that EUFOREA is working to address.  And in the UK, the MACRO project is focused on identifying the best management for patients with Chronic Rhinosinusitis.

There’s an important role for patients to play in this too. Self-management and sticking with a course of prescribed treatment is very important; something as simple as regular sinus rinsing can make a real difference for people. Also, being informed about the condition, and having the knowledge and confidence to talk to one’s doctor and push for a referral to a specialist.

There’s work to be done, with a real need for improved education for both patients and professionals alike.  The real positive that I took away from this week’s meeting was the shared consensus and commitment to work in partnership to deliver better outcomes for patients.   Fifth Sense and EUFOREA’s goals are very much aligned and I am really looking looking forward to us working together over the months and years ahead. I’d like to take the opportunity to thank the EUFOREA team for all the work they are doing on behalf of the many people living with this debilitating chronic disease.

Duncan Boak

Chief Executive and founder, Fifth Sense

*A research paper based on the results is in the process of being published