Example of patient involvement
Sally has Parkinson’s Disease. She works with Professor Gabriele De Luca and Dr Gina Hadley in the neurology teaching programme for Year 5 medical students. Here she tells us a bit about her experience of being an Expert Patient Tutor (EPT).
I've been involved with Gabe's EPT project from the start. It began with me being the patient while students asked about my symptoms and being checked for the three main motor symptoms of Parkinson's. The students were surprised to learn that those symptoms didn't really impact me! I was able to show them that you miss things if you stick to the list of ‘typical’ symptoms, such is the complexity of Parkinson’s.
I talk to students about the irritations of living with this neurological condition. I found students were keen to have some idea of the everyday challenges that people living with Parkinson's (PWP) faced. Gabe introduces the students to the causes of PD, how the brain loses dopamine resulting in a diagnosis of Parkinson's. I take over, explaining features of my own Parkinson's such as acting out vivid dreams, difficulty cutting up food, peeling vegetables and how my voice has changed.
I also have the opportunity to teach students direct. I hand out cards with statements that people with Parkinson’s will have heard many times prior to diagnosis...'Speak up, you're mumbling', 'Come on! It's taking ages for you to get dressed'...and more. This helps students to appreciate how it feels before you get your diagnosis.
We have also prepared an aide memoire of symptoms common in many patients and it's now a valuable tool for student's learning.
My career was as a teacher and I'm grateful that Gabe trusted me to deliver these lessons. It also means the students experience different teaching and learning styles.
You may get the feeling that I enjoy my role as Expert Patient Tutor...and you'd be so right!