5 Questions with Vanessa Carter

1. Can you tell us about your journey into global health – why did you decide to become a patient advocate? 

When I was 25 years old, I was involved in a severe car accident in Johannesburg. I had damage to my stomach and internal organs, neck, back, pelvis and had multiple fractured bones in my face as well as lost the right eye. After being resuscitated on the side of the road, I was taken to the Charlotte Maxeke Johannesburg Academic Hospital. Although my internal injuries were the most life-threatening, my facial damage was the most complex and would end up taking me another ten years to repair. After six years of reconstructive surgeries, they implanted a prosthetic in my cheek. A few weeks later when out shopping one day, I felt a lot of fluid on my face coming from the implant and ended up in emergency surgery to clean it and repair the damaged tissue. After being discharged, two weeks later the infection returned, and I was readmitted to emergency surgery. Two weeks after that surgery, once more the infection returned, but worse. Almost a year later after repeated surgeries between different doctors, my plastic surgeon removed the prosthetic. The removal of the prosthetic was performed without my prior consent which rang alarm bells. I knew it had been sent for testing and so-called the pathologist offices to understand what was going on. What type of infection was this and why wasn’t it going away? Why did my plastic surgeon panic like that and take all that risk onto his shoulders? The pathology lab sent the test back and four bold letters at the top read, “MRSA”. I Googled the term, and learned further that it meant I had “Methicillin-resistant Staphylococcus aureus” which was a type of antibiotic-resistant bacterial infection or “superbug”. The test also had a long list of different antibiotics on the left column and a corresponding “R” or “S” next to them. The letter “R” means I was resistant to a specific antibiotic, and “S” means I was susceptible. I started to educate myself about antibiotic resistance and it was then that I realised how the infected implant was contributing towards it, and in addition how a repetitive overuse of antibiotics and surgeries was too. I knew I couldn’t afford any more failed surgeries and by now the damage was extremely severe to repair as the bacteria had destroyed most of the tissue on my cheek and under my eye. I couldn’t even keep a false eye in, so I had to cover it all the time with an eye pad. I put together a short medical history and emailed renowned doctors overseas. To my surprise, one replied that was a face transplant craniofacial surgeon and offered direction over a Skype call because he saw cases like mine all the time. He explained that I needed a zygomatic osteotomy, meaning I needed to cut the bone and move it forward, then do minor touch ups. With that surgical direction, I found doctors in South Africa who could perform them. Unfortunately, the infection did reappear, this time we believe in the bone. I also had signs of a severe allergy. We then had to rotate different types of oral antibiotics as well as stop a topical antibacterial ointment which I was using on the surgical scars until finally, a few months later the infection finally disappeared. All in all, this was three years of my ten-year reconstruction journey. Following my journey, some things really bothered me. One of those was the lack of communication between my doctors and in general, even on pharmaceutical packaging and marketing which could have made a difference to my knowledge of AMR. This type of knowledge I believe could have made a difference to the way I was making surgical decisions, how I was taking my antibiotics, and practising infection care both in the hospital and at home. It bothered me that such a widespread, devastating issue wasn’t common knowledge. Even though we argue that knowledge doesn’t change behaviour which I agree, it felt like my basic patient right to information to empower me to make better decisions had been stripped away from me. This was especially true I think because many of my health providers might have felt it too complex (or scientific) to explain AMR in the first place or they might not have been able to do so, for example, the nurses who were looking after me when hospitalized or community pharmacist I was visiting for medication like Vancomycin for the MRSA because of a lack of training in AMR. I had been in marketing until that point since 1997 and so decided to get online and raise my voice around these issues. This was back in 2013 before the UN High-Level Meeting in 2016 when there was very little online presence including among the various experts we see actively online today. 

2. What are the main priorities for World Antimicrobial Awareness Week (WAAW) this year? 

World Antimicrobial Awareness Week’s theme this year is “Working Together to tackle AMR”. I resonate with this theme for many reasons in terms of my own story of survival. One reason is that I had to persevere for many years towards improving my own care coordination among my specialists as a custodian of my own health. Once I understood the basics of AMR, which for many years I was oblivious to, I could ask more pertinent questions like, “What sort of risks are there for infection?”. I could also do a better job as a member of my medical team by adhering more carefully to my antibiotics by ensuring that I take them at strict equal intervals. Patients are a huge part of the team. If I was for example stopping my antibiotic course halfway or not practising strict infection control by, for example, sanitizing my hands and then touching my infected face, I was a major part of the problem. We spend a small percentage of time with our care providers depending on the medical diagnosis, but that small to large window of time matters. 

Second, I think as the main priority of World Antimicrobial Awareness Week we need to realise that AMR is not only an issue in hospitals and care settings because these medicines are being widely used in farming practices as well as food production, pet, and animal health, they are also wrongly disposed of in the environment which impacts our soil and water. If we only try to tackle this issue from a hospital level, we are completely missing the mark. MRSA in my case is a good example because that type of antibiotic-resistant bacterial infection can be acquired and spread in livestock (animals and farming) LA-MRSA (Livestock-Associated), the community from infected objects or from others who are colonized with it (CA-MRSA – Community-Acquired), or even from our pets. In my case though we believe the MRSA infection was from the hospital (HA-MRSA – Hospital-Associated). The way that these deadly bacteria, fungi, viruses (Microbes) and parasites move between humans, animals, food, and the environment is called One Health. They always have, but we have an even more dangerous problem when they don’t respond to the medications that were designed to treat them, namely antimicrobials like antibiotics that target bacterial infections. 

3. What are three ways that people can get involved in WAAW (18-24th November) either in-person or online?   

The WHO have been spearheading awareness raising in this regard and one way to do that has been to “Go Blue”. Considering AMR is yet to experience the same level of awareness raising as for example Breast Cancer where an individual would wear a pink ribbon to express their support at work, I think this was an incredible step forward. Highlighting your own social media presence or wearing something blue during WAAW is a powerful gesture if you are unable to participate in any other way. Go ahead and share that message across the web and in the community as well as with your own family and friends who I am sure need that information because they more than likely have used antibiotics themselves. Secondly, I would say, as a health professional doing something small like directing a patient to a trustworthy resource about AMR when prescribing an antibiotic or dispensing an antibiotic, not necessarily to put a patient off taking their medication but to give them the basic information they need to understand that this problem exists. Third, support each other in raising awareness and building partnerships because never has a health issue needed such mass coordination as this does, globally. All our lives depend on this because at this stage there is no concrete plan B to fighting resistant infections. 

4. In your view, what more needs to be done to raise awareness of AMR?

Communication is the most obvious. There is a shortage of awareness raising in the media, both online and in traditional realms compared to other causes like cancer and disability. But it goes beyond that, we need to have meaningful conversations with our healthcare providers. They are one of the most trusted resources patients have and yet those conversations are still not taking place in one-to-one settings. Communication and awareness raising goes beyond traditional marketing channels. Point-of-Care diagnostics are also a major player in how we could potentially identify whether an infection is viral or bacterial, for example, as well as act as a tool to generate discussion and promote more informed decision making by a patient. Patient and Public Involvement and Engagement (PPIE) is also key to understanding the ground issues which are impacting the low level of understanding about AMR, although this is not always easy to facilitate because of a lack of funding in this area. It does need to form a proportional part of the funding process so that their input feels valued.
 

5. What do you hope will be one achievement for the CwPAMS 2 programme? 

I have worked part-time as an antimicrobial resistance communication manager for the Commonwealth Pharmacy Association (CPA) and Commonwealth Partnerships for Antimicrobial Stewardship Programme (CwPAMS) since 2020. Originally from Johannesburg, I relocated to the UK during COVID in 2020 and joined their team. I am inspired daily by the work they are doing on a large scale around the Commonwealth which in many ways addressed some of the gaps I experienced as a patient during my own journey. CwPAMS have developed partnership programmes between the UK and Africa which have evolved from an original four to eight countries, namely Ghana, Kenya, Malawi, Nigeria, Sierra Leone, Tanzania, Uganda, the UK, and Zambia. Importantly, they are building the technical expertise which is required by patient-facing pharmacists in these regions, and beyond. Pharmacists are a key part of the patient journey, it was in mine, and I think by empowering and educating them to reach and teach the community, patients, and the public about AMR and how to protect these precious medicines, we’ve accomplished great strides in this battle.  

 Another project I am working on and hope to launch in the coming months is a charity focusing on advocacy capacity development from a patient and public level, and ask your readers to keep watching this space.