Smell Matters: Co-developing Primary Care Pathways into Parkinson’s Research

Lead Applicants: Viktoria Azoidou & Alastair Noyce

Lead Member: QMUL

Many people visit their GP because they notice changes in their sense of smell. For some, this loss is short term, such as after a cold. For others, it can be one of the earliest signs of Parkinson’s disease. People with reduced smell, also called hyposmia, are around four times more likely to develop Parkinson’s in the future. Despite this, patients who raise the issue with their GP are often reassured but left without clear advice, support, or referral. At present there is no agreed pathway in primary care to manage smell loss, provide patients with trusted information, or connect them with relevant research opportunities.

a)-This project aims to close that gap. We want to make it easier for GPs to know what to do when a patient reports smell loss, and to make sure patients understand why it matters and what their options are. We will organise a workshop which will help us to co-develop practical materials that are simple, inclusive, and directly relevant to everyday GP consultations. Final resources will guide GPs on next steps, and offer patients clear information. These will also facilitate research for people through our ongoing studies, the PREDICT-PD, an online study of over 13,000 participants, identifying those at higher risk of Parkinson’s before symptoms develop, and Slow-SPEED UK, a trial testing whether exercise supported by digital tools can help people with smell loss reduce their future risk of Parkinson’s. 

b)-We will take a co-develop approach, working closely with people who have lived experience of smell loss, carers, GPs, nurses, and community partners. At the start of the project, we will run a workshop which will help us to understand what information is most helpful in a GP consultation and how it should be presented. Based on this feedback, we will create a simple one-page GP decision guide, patient leaflets and posters written in plain English. These resources will be translated also into key community languages such as Bengali and Somali. We will also co-produce a short  professionally edited video made with patients and GPs to show the journey from first noticing smell loss to accessing research and specialist care. Draft versions will be reviewed by patients, public contributors, GPs, and community organisations to ensure accuracy and inclusivity. Both digital and printed versions will be available so that people without internet or smartphones are not excluded. Final resources will be shared widely through GP practices, community centres, and online platforms.

c)-The project will run for one year. From January-to-March 2026 we will run a co-develop workshop. Between April and June 2026 we will draft and refine the resources with feedback. From July-to-September 2026 we will finalise the materials including the video. Finally, between October and December 2026 we will distribute the final resources across GP practices, community organisations, and research networks.

By the end of the project, GPs will have clear, practical tools to use in routine consultations, and patients will have trusted, easy-to-understand information about smell loss and what to do next. 

Amount: £2,080