People

I am a Research Fellow in the Patient and Public Involvement team at the NIHR Applied Research Collaboration South West Peninsula (PenARC), University of Exeter, and the Operational Lead for Research Inclusion. Before moving into research, I worked for several years as a carer and support coordinator across charity, social care and NHS settings, particularly within dementia care and stroke rehabilitation. I have always loved listening and learning from people, and I was curious about how we could shape better services and outcomes for those I supported. That curiosity led me to study medical sciences and ultimately into research, where I am driven by improving care and where I am driven by addressing health inequalities.

Involving people with lived experience has come a long way since my diagnosis of Alzheimer’s in 2010 and my involvement in research soon after, and this project is an excellent example of advancing this work further. To engage usefully in any research projects, I need support both from the professionals co-producing the work with us which is often virtual through email and zoom but I also need intergenerational support face to face from diligent, enthusiastic and empathetic university students such as Evie and before her Alicia. This boosts my confidence to contribute and deepens my knowledge of the subject through our intersessional conversations and collaborations whilst engaged in the zoom or face to face meeting. I am proud with what we as a co creation team have achieved with this project and the brilliant team at Exeter and sincerely hope that it will be useful to other researchers, professionals and students so that it achieves the positive impact it deserves.

We had thoughtful fun considering what visual image would represent our research work. After choosing a tree as the central point we then dug into the detail of what the roots, the branches and foliage should represent. We wanted a striking but simple website, one that encouraged different audiences of the website to engage, navigate and learn. Working with the web design team was a fascinating learning opportunity for us: selecting fonts, colours, boxes, images, headers… and we are proud of our involvement at every stage of the production. We hope that researchers and stakeholders will learn from the website and take on our findings into the practice of involving people with dementia in their research. We hope that people experiencing dementia will find the website helpful in encouraging them into becoming involved with research.

This has been one of the most memorable projects I have been involved in as a member of the public. We have been able to have a really significant impact into the outputs, but more than that the creative approach taken by Naomi and team has been amazing. Allowing time in sessions for genuine creativity and connection, has in my opinion yielded a greater outcome than entirely ‘work’ focused sessions. We have laughed and made good friendships. And importantly Naomi makes time for us as individuals if we need support after a session.