During my time as a volunteer with Rising Star Outreach (RSO), everyday began with a journey to one of the leprosy colonies that Rising Star supports. All of these colonies are between one and three hours away from Chennai, in rural parts of Tamil Nadu. The long car trips – though gorgeous and full of insights into daily life in India – really drove home for me just how isolated these vulnerable populations are from the city, its services and the rest of society.
I travelled with RSO’s mobile medical clinic, an incredibly well-equipped vehicle that – once parked in a colony – could blossom into a fully-fledged community health clinic in less than 20 minutes of cooperation and coordination. The clinic popped up in churches, community halls and even, once, the shade of a particularly large tamarind tree. The resourceful flexibility, transportability and adaptability of these clinics to each community totally resonated with me as a perfect model of care for such far-flung communities. It would be extremely unrealistic to set up a centralized clinic or hospital to serve this population, who are poor, isolated and are often physically disabled. It is travelling to them that absolutely makes the difference between care and total despair for these patients.
The mobile clinic visits 13 colonies on a rotating basis, so that every colony and every patient is seen once every 15 days. It is staffed by one doctor and five nurses/community health workers yielding from the Tamil region. A different travelling team from RSO is responsible for leprosy screening, detection, and follow up for patients on government-administered curative treatment. It is only after the patient has completed that treatment that they are referred to the care of the mobile medical clinic. Thus, all of the patients seen by the clinic I was travelling with had already been cured of leprosy. The clinic’s intention, then, is essentially palliative care: symptom and pain management to promote healing and comfort for patients with ongoing negative effects from the disease. For the communities as a whole, however, the intention and effects of the clinic are much further reaching: challenging stigmas and health beliefs, promoting prevention behaviors through education and advocacy, and uplifting the whole colony through compassionate care for all-round community wellbeing.
Medical Care with RSO
Patients seen in the mobile clinic rotate through stations: Blood pressure monitoring, blood glucose checks, removal of old bandages, antiseptic foot wash, nail care, leg and foot oiling, eye drop provision (leprosy affects the nerves involved in tear production and blinking!), a consultation with the doctor, and dispensing of medications and dressings. The Indian government has very strict regulations on what foreign volunteers can do in a medical context, which is a whole other topic of conversation but – in short – I think is wonderful. Although it was frustrating at times, because the medical student in me yearned to be more involved and practice my clinical skills like measuring blood pressure or blood glucose, I think the fact that the government sets guidelines and that NGOs like RSO adhere to and respect those guidelines is fabulous. It essentially protects the country and its vulnerable populations from “voluntourism:” the risk of unqualified tourists being considered medically qualified just because they are white, and allowing them to perform roles that, in fact, local staff are more qualified to do. But anyways, this meant that my main roles as a volunteer included bandage changes and care of legs/feet (and their leprosy-associated wounds) as well as health education activities, as this is what is deemed by the local health governance to be acceptable as good-quality, useful medical activities for a volunteer with my training.
Before I get started describing my personal volunteering experiences, however, I will mention how unbelievably awesome I find it that patients’ blood pressure and blood glucose are routinely monitored, despite the fact that these measurements don’t relate directly to leprosy care. In Laos last December, I observed the tragically heart-breaking case of an elderly man who travelled hours on horrendous roads to seek cataract surgery and restore his vision, only to find out that uncontrolled hypertension and diabetes (high blood pressure and blood glucose!) made the operation inadvisable. By keeping an eye on these seemingly mundane indicators of general well-being, RSO ensures that – if/when these patients should need a hospital referral for serious health issues that arise – they are in good enough general health to receive the care they need.
As I wrote about in my previous post about leprosy, the affect on a patient’s peripheral nerves results in a loss of sensation in the hands and feet that leaves extremities prone to injury and ulceration. Without the ability to feel pain, and often with impaired vision due to other effects of leprosy infection, patients do not notice their ulcers and may unintentionally neglect them. This results in inadequate care that can cause progression of the ulcers or the development of infection, propagated by conditions of poverty with poor hygiene/sanitation.
So, my main goal in caring for these ulcers was to get them CLEAN. This was rarely an easy feat, as they were oftentimes caked in dirt and dead skin and home to flies or other insects. The first time I saw an ulcer in this state, my body was entirely undecided as to weather it should weep, faint or vomit – and the only thing that kept all of those things from happening was the look on the patients’s face: the pain, humiliation, and desperate need for my love, compassion and care. This brings me to why this experience – simple wound care – was so immensely powerful and has stayed with me so strongly. Sitting/squating down at ground level, looking the patients straight in the eye, I had the humbling opportunity to touch, with the intention to heal and protect, some of India’s most “untouchable” people and assure them that, despite what society has forced them to believe for decades, they were worthy of care.
In the process of learning how to properly clean these wounds, I learned a LOT about infection prevention and control, and how to maintain sanitation in unsanitary conditions. I also came to some personally world-shattering realizations, however, about the importance and global relevance of palliative care. Because treating symptoms after disease has struck lies so far on the opposite end of the spectrum from the disease prevention activities I have been advocating for so whole-heartedly this year, it often slips from my radar. But yet, palliative care falls precisely within another vitally important realm of community health that I had hoped to explore this year: culturally-relevant, narrative-based care that contributes to the wellbeing of the whole patient.
My role as a volunteer actually involved venturing away from the mobile clinic, armed with a tupperware container full of supplies, and seeking out the patients who were in such debilitating states that they could not make it down the road to the clinic. Health that has deteriorated to such an extreme extent often carries with it a story of incredible adversity, struggle and heart break. Taking the time to care for the physical wounds of these patients, accompanied by local members of the medical team for support and translation, gave me treasured chances to engage with these patients’ narratives and ask for their stories; the stories of their illness but also, more importantly, the stories of their lives. I asked about their children and their loved ones, their hobbies, their concerns, their losses, their pain: the emotional ulcers a life-long battle with a cultural ‘curse’ leaves on the heart. And let me tell you, these stories, which I’ll share in another post because I’m too wordy to get it all in one, have left a footprint on my heart -a footprint that may be lacking some toes, but certainly does not lack humanness.
Taking the time to listen to the patients was as thought-provoking as it was heart-wrenching. For example, twice I was asked not to bandage severely ulcered hands, as the patients said they would not be able to eat or function around the house if the hand was bandaged. As someone who looooves hygiene and sanitation and preventing infection, respecting this patient wish was not easy for me, but an important lesson in how, especially when operating in a country that is not our own, we must strive to balance our medical know-how with the narrative and daily functional needs of a patient in a context that is relevant to them.
Beyond infection prevention/wound healing and compassionate care, another goal of the ulcer care is education through role-modelling to promote sustainable community care of the same standard. This involved engaging the patient’s spouse or family members in the wound care activities and providing clear demonstrations of how best to treat ulcers. Using best practice and a high standard of care in a community setting sets an example and motivates a patient’s loved ones to follow suit and continue treatment on days when RSO’s clinic is not in their colony. Promoting a feeling of collaboration with the community engages people and empowers them to work together towards a common goal of lasting good health.
More about volunteering with RSO in the next post!