The iCAST Study - working towards better care and support for people with smell and taste disorders
iCAST (Improving Care for people with Smell and Taste Disorders) is a research programme that aims to help improve care and support for people living with changes to their sense of smell and/or taste.
People in the SmellTaste community know that issues with smell or taste can affect far more than the senses themselves. They can have an impact on eating and nutrition, safety, emotional wellbeing, relationships, social situations and everyday quality of life. Yet the care and support available does not always reflect the full impact of these conditions.
SmellTaste is working closely with researchers from the University of East Anglia and the University of Southampton to help the team identify what better care and support could look like in the future. Together, we want to understand what people with smell and taste disorders need most, and what should be included in a future package of care and support.
Your experiences matter
We want to hear from you. If you live with a smell and/or taste impairment, your experiences can help shape future care and support. You know better than anyone how this can affect daily life, what challenges you face, and what support can make a difference.
The research team is inviting people aged 18 and over to take part in an online focus group with up to 6 other people with smell and/or taste disorders, or an individual interview with a researcher.
We want to hear from people with a wide range of backgrounds and experiences. You may have:
- Complete lack of smell or taste
- Reduced ability to smell or taste
- Distorted smells or tastes
Whatever your experience, your views are important.
Interested in finding out more?
To find out more about taking part, you can:
Scan the QR code or
Complete the online expression-of-interest form
Email Dr Donna Clutterbuck: icast@soton.ac.uk
There is no obligation to take part. Expressing your interest provides the opportunity to share more information to help decide whether participation is right for you.
More information on the focus groups can be found here: https://www.uea.ac.uk/groups-and-centres/rhinology-group/research-projects/icast-programme
More about the iCAST study
From understanding the problem to developing better support
The current iCAST project is a 12-month research project funded by the National Institute for Health and Care Research (NIHR). While this first project lasts one year, the aim is to develop a longer-term programme to improve care and support for people living with smell and taste impairment.
During this initial year, researchers will bring together different types of evidence to understand both what happens now and where improvements can be made. They will:
- Look at anonymised healthcare data to understand how smell and taste disorders appear in GP records and what happens when people seek care or are referred for specialist support.
- Listen to people with lived experience and healthcare professionals to understand the challenges people face, what support they currently receive and what would make the greatest difference.
- Review existing research to find out what kinds of support have already been developed or tested, what appears helpful and where important gaps remain.
Together, this will help the team identify what a future package of care and support should include. This could involve areas such as eating and nutrition, psychological and emotional support, self-management and digital support.
Looking ahead
If successful, this next stage could include:
- a national survey to find out more about who is affected by smell and taste impairment,
- working with people affected by smell and taste impairment to co-design a support package, and
- testing and exploring how effective support could eventually become part of routine healthcare.
The goal is to move from recognising the impact of smell and taste impairment to developing practical, evidence-based care and support that can make a meaningful difference to people’s lives.