Sharing my experience of teaching medical and healthcare students
Mark, a Patient and Public Involvement (PPI) Contributor, shares his experience of bringing lived experience of Parkinson’s to medical students at the University of Plymouth.
Background
I was diagnosed with Parkinson’s in August 2003, just after my 40th Birthday. After I retired from the Police in 2013, I volunteered on some fund-raising activities for Parkinson’s UK, and from there I was recruited as a volunteer speaker and fundraiser, raising nearly £20,000 for Parkinson’s UK to date. Whilst doing this I realised that I needed to know a lot more about the condition than I did in order to answer audience questions at the end of my talks.
To learn more I went along to a Parkinson’s UK open day about research, held in Plymouth and soon found myself to be a “Research Champion” for the Research Support Network (RSN), helping to recruit People with Parkinson’s (PwP) into research projects and giving feedback to researchers, as well as the more obvious role of being a research participant myself. About 12 months later I saw an opportunity on the Parkinson’s UK website and took up a volunteer role in the RSN as a member of the Patient and Public Involvement, Involvement Steering Group (ISG), which I sat on for six years. The ISG is responsible for shaping the Research Support Network’s Patient and Public Involvement programme at Parkinson’s UK.
Speaking to students
During this time, I had attended my local Parkinson’s Support Group, and during one meeting I was invited to give a talk to some Physiotherapy students at the nearby Plymouth University faculty of Allied Health Care. I went along and had a nice chat with some students and was invited back — but I realised that I needed to take a more structured approach if I was to present again in a professional manner.
I worked with the lecturer to ensure that I covered the salient points that the students were being taught, but also, through agreement, introduced my own elements of the topic and through this interaction we devised a more relevant and dynamic presentation, for which the University were happy to reimburse me for my time on a more professional basis.
Becoming a Patient Advocate
In 2019 (before the pandemic) I was approached by the Lead for Medical Humanities at the University Medical School to work alongside them as a ‘Patient Advocate’ in the newly formed PPI programme of the Medical School. Again, like research, the University had adopted a Public and Patient Involvement (PPI) approach, using real-life patients to bring the lived experience to medical students. Previously, to quote one member of the University staff, “We just wheeled out a random patient, who chatted about their symptoms for 15 minutes and then left”.
The programme I am involved in now consists of a 90-minute teaching session (plenary) led by the lecturer but undispersed with structured input from myself. We look at such sub-topics as the impact of diagnosis, the impact on friends and family, self-worth, the future and other aspects of Parkinson’s — but it could apply to most chronic health conditions.
The key part of this input for the students is the construction of the narrative, with the lecturer giving the ‘textbook’ information and the patient putting this into real terms using their lived experience. This can only be achieved by collaborative working between the Patient Advocate and the lecturer, in a similar relationship to that of researcher and patient in Parkinson’s research. Using the skills and knowledge that I acquired during my very enjoyable and personally rewarding membership of the ISG, I am now very proud to say that I am able to help educate and enrich the learning of the Doctors of the future.
If you’d like to write a blog about your experience of being involved in research, we would love to hear from you! Email us at researchinvolvement@parkinsons.org.uk
