Patient involvement in research is critical. We are looking to recruit patient advocates from South Africa and India in a study we are conducting across surgical pathways in India, South Africa, and Rwanda. In this first of a series of blogs on the role of the patient and the public in research, Vanessa Carter, a patient advocate in South Africa and a member of our International Advisory Board to the ASPIRES study shares with us her journey to becoming a patient advocate.
Why I became a patient advocate for antibiotic resistance
For fifteen years I’ve been telling the same story, over, and over again. I’ve been telling it not only to academic researchers and at medical events around the world, but to everyday people whom I meet for the first time.
You see, it’s difficult for me to hide my patient story because the irreparable damage that was caused by an antibiotic resistant infection called methicillin resistant Staphylococcus aureus (MRSA) is on my face, and you can’t hide that.
You’d think I’d be a seasoned storyteller by now, wouldn’t you? But still today when presented with a question or two about my journey I often identify new issues which could have been avoided to minimise the damage in the first place. I’m grateful that I can now share my experience with researchers who have the power to influence change through science. My initial goal of advocacy was to promote change and through storytelling today I am doing exactly that.
Why my voice is central to academic and clinical research
My story was important to this specific area of academic research because I had spent close to a decade in the medical system after a severe car accident in 2004 left my face disfigured. ASPIRES is an acronym for Antibiotic use across Surgical Pathways – Investigating, Redesigning and Evaluating Systems and it is a research collaborative between several international universities including Imperial College London, Amrita Institute of Medical Sciences, University of Cape Town, University Teaching Hospital of Butare, Kings College London, University of Leicester and the University of Hertfordshire.
I chose to work with ASPIRES because my patient experience with MRSA was closely related to surgical complications. The ASPIRES research group focuses predominantly on the optimal use of antibiotics and infection prevention and control practices relative to surgery dynamics. Surgical care involves multidisciplinary teams, this project looks at care co-ordination, and innovation might be used to resolve current system deficiencies.
In terms of working with ASPIRES, my focus is on what went wrong with my surgeries and the learning this can provide. I had wonderful doctors, some of which I continued to stay in touch with afterwards and kept a close relationship. What bothered me was the tools and systems they didn’t have to support my journey as a patient. For example, why couldn’t they see how many antibiotics they were all prescribing to me at the same time whilst referring me to each other in circles? Why as the patient did I have to compile my medical data manually to find an expert overseas only to find the solution back home which was never accessible because that doctor wasn’t visible online? These are important questions which going back to why I share my patient story matters to the medical researchers who are trying to fix them.
The long-lasting impact of infection in my life
Six years into my facial surgeries and a fourth prosthetic to repair the crushed bones, I acquired an infection. The prosthetic that was implanted was performed by a maxilla facial surgeon however I was simultaneously under the care of other types of super-specialists because each of them were tissue specific. In other words, there was a plastic surgeon who was an expert in skin and soft tissue, he was also a microsurgeon so he worked with the vascular networks in the face, I also had an ophthalmologist and an ENT surgeon because the sinus passages were directly situated over the implant.
After acquiring the infection, I found myself being referred between them, from one specialist to the next, each prescribing a course of antibiotics whilst advising that I should seek the advice of the other one. This continued for over a year and in between these months, I had several surgeries to debride the prosthetic of bacteria. Finally, the plastic surgeon advised that he would remove the infected prosthetic because if someone didn’t do that it would turn fatal and by then I had already lost substantial portions of my facial tissue from infection. I couldn’t afford to lose any more tissue.
After the plastic surgeon removed the infected prosthetic, he sent it for testing. Inside me I knew something was wrong. I called the pathologist and asked to see the test, that was the first time I had heard the term MRSA in all my years of surgery. It was the first time that I was empowered to search online as to why the antibiotics I was being prescribed between all these different specialists weren’t working. It was the first time I could understand why this infection wasn’t going away, because the bacteria were resistant to the antibiotics being prescribed.
I spent the next year unable to perform any surgery because we had to wait for the surgical site to settle from infection, I also had to take a course of Vancomycin which is the drug of choice for treating most MRSA infections caused by multi-drug resistant strains of bacteria.
During that year, I compiled my medical data into a four-page document and searched the internet for the best facial reconstruction doctors I could find around the world. Back home in South Africa that was difficult to do because many of our doctors didn’t have websites. I was fortunate to connect with a craniofacial surgeon called Dr Edward J Caterson at the Brigham and Women’s Hospital in the USA working in their face transplant team who offered a video consultation to provide direction.
Dr Caterson was a doctor who specialised in both bone and soft tissue which was what made him different to a single tissue expert I had consulted with before. Working on both tissues meant he understood the healing complications if surgery failed. He spent 30-minutes telling me that I needed to realign the natural bone with a zygomatic osteotomy, then do minor plastic surgery touch ups. He emphasised to avoid any more foreign implants which could aggravate infection again. I knew I couldn’t afford any more surgical complications, so I took his advice and began to visit as many doctors as I could back home until I found one, 30kms away from my home who mimicked it.
We performed the surgery and my face was finally repaired, even after the infection damage which left my doctors telling me it might never be possible to do so. I had covered my face until that day with eye pads, glasses and anything else I could find because it was publicly unacceptable. Can you imagine, for example, I had a 4-year-old son at that time, when fetching him from school my face frightened the children and he was asked “What is wrong with your mom’s face?”. I was incredibly fortunate that I was able to change that. I could stop hiding my face from others.
I believe that one of my turning points was having a clear plan to minimise surgical intervention after MRSA. With such a fragmented medical system made up of super specialists, doctors and other healthcare providers working in isolation from each other it is no wonder medical errors are so rife.
What has my experience been as a patient advocate
Telling our patient stories can be both an emotional and healing experience. Physically draining at times, especially if you have a medical condition or disability like me. Some patients are comfortable to do so, whilst others might prefer to keep their experiences private, which as a patient I can relate to as well.
It’s never been easy for me to share my story to large audiences on stage. I am an introvert for a start and so the fear I need to overcome first before I talk to an audience is overwhelming, never mind the stigma of exposing my face openly on stage at my worst moments. The more I have shared my story though, the easier it has become. The more I have also realised that it wasn’t about sounding like a doctor or a scientist which I did worry about initially, it was about speaking from the heart, sharing my experience so that it could make a difference to someone else. Sharing my story to the academic world meant it wasn’t only creating awareness for other patients, but I was also sharing it with an audience whose goal was to persuade meaningful change.
Storytelling doesn’t only have to take place on stage or in a research study, simply sharing it in a blog like this makes the world of difference too. If you’re like me and you hate writing or feel you’re unable to express yourself that way, telling stories using art or pictures such as we do on Instagram or in music and paintings, matters too. My incredible colleague Elizabeth Jameson, a fellow e-Patient scholar and artist living with Multiple Sclerosis is a good example of that. She creates art using her own brain scans with the intention of celebrating and honouring what it means to be living with an imperfect body.
As a patient and medical research collaborator of ASPIRES, my purpose for writing this blog is to inspire other patients who have experienced similar journeys related to antibiotic prescribing and surgery. Perhaps you didn’t have a resistant infection, perhaps it was a minor infection, perhaps you never acquired an infection at all, but you felt something in the system was wrong and you’d like to share those views? Perhaps the management of your infection could have been handled better?
If there is one thing that I have learned in my 15 years of patient advocacy, it’s that only by speaking out can we create lasting change. We complain about our health systems, but very rarely are we open to sharing in the responsibility of improving things.
Participating in the process of change matters and it’s the only way progress will ever be made .
Guest Blog by Vanessa Carter vanessacarter.co.za @_FaceSA
We are looking for more stories to share from around the world, including South Africa. If you have a story to share or would like to get involved, contact us:
1. Email: firstname.lastname@example.org
2.tweet to or DM us at @ARC_at_Imperial