With the rapidly changing and evolving practice in managing COVID-19, MASCC is honored to begin a series of articles sharing our members’ professional experiences during the current crisis. This month, we feature Sameena Bilgi, MA, Head of Patient Guidance Program, from the Gunvati Jagan Nath Kapoor Foundation in Mumbai, India. The foundation provides guidance and psychosocial services to patients in Mumbai-Maharashtra and Amritsar-Punjab.
The densely populated city of Mumbai, with approximately 25 million residents, is the epicenter of western India. As of press time, news reports indicated Mumbai has over 3,000 positive COVID-19 cases and 139 deaths, the highest mortality rate in the country. Maharashtra, the state where Mumbai is located, reports a total of 4666 with 232 deaths.
In the past month, Bilgi’s team of 12 patient guidance coordinators have reached out to approximately 7000 patients. They have educated, guided and connected the patients and caregivers to manage their healthcare crisis during this pandemic.
Here is her story.
Editor: Sameena, tell us about the work of your foundation and the patients you work with.
Sameena: Gunvati Jagan Nath Kapoor Foundation provides a “Patient Guidance Program” that guides cancer patients to the resources they need while undergoing treatment. Our patients are primarily of low income and come from various parts of India. Each one of our patients is referred to us by a physician or medical social worker, primarily from a premier cancer institute in Mumbai and Amritsar.
Editor: What kind of support do you provide?
Sameena: We provide them our nine core services through which we guide and empower patients. Generally, these patients have low to no literacy. As soon as a patient is diagnosed and referred to us, we call the patient and begin to help them maneuver and manage treatment. Patients who have travelled from all over India often stay in Mumbai for their treatment. We help them find accommodation while they are in treatment, often providing reimbursement for their living arrangements. We help them understand their treatment plan, connect them with medical social workers, and provide financial guidance, food and emotional support. Patient advocacy is also important. We directly liaise with these very busy physicians who are pressed for time. We also oversee the “Save a Life” initiative, a voluntary blood platelet donor program.
Editor: What challenges has COVID-19 presented for your patients and the foundation?
Sameena: I will share with you an example. Today, I received a call from a young palliative cancer patient asking for help getting pain relieving medicine. She lives 61 kilometers from the hospital with no transportation to the hospital. Public transportation availability is limited during the lockdown. She felt helpless. I contacted her physician at the hospital who immediately guided me to a palliative care specialist just 10 kilometers from the patient’s residence. I contacted the specialist, who readily agreed to see the patient. I was so happy to share this news with the patient and she was able to easily get to the clinic and get immediate relief for her pain.
This is the story of only one patient who was in dire need and received the right intervention, but there are many patients who find it difficult to access help they need. COVID-19 is creating a host of challenges to cancer patients.
One major challenge for our organization is that we always had face-to-face or one-on-one rapport with patients. Suddenly providing guidance via telephone is strenuous.
Editor: What are those challenges specifically?
Sameena: Our interactions with the patients and caregivers have shown several major challenges. The first is anxiety – most of the patients we work with are anxious about the cancer spreading during this waiting period. They are also worried about the impact of COVID-19. We provide them need-based assistance such as the email address of their physician or hospital. Or connect them with an online portal where they can write their medical concerns and get an expert opinion. This has helped to allay their fears.
Another challenge for the patients is the lack of accessibility to cancer treatment and drugs related to pain and long-term medicines. Many of the patients visiting the hospitals are of low income from across India (remote villages) with little access to oral chemotherapy, hormonal drugs, and palliative care. And with no transportation to far-away hospitals, they feel an overwhelming sense of helplessness. We provide them names of cancer hospitals near their vicinity to receive medicines, but it is challenging to arrange a private vehicle or ambulance to reach the hospital facility.
Another issue I touched on earlier is accommodation. Due to the sudden COVID-19 lockdown, patients from out of town who are in treatment in Mumbai cannot return home. Low-income patients with a long period of treatment face a financial crunch for accommodation in the city. It is critical for patients and their caregivers to manage funds and ration during this lockdown period. Lack of funds is wreaking havoc on patients’ wellbeing, and they feel more vulnerable to cancer, more so than to COVID-19. We are working directly with an accommodation center to facilitate stays for these patients and ensure reimbursement.
Overall, cancer patients now experience restricted access to their doctors, nurses, social workers, navigators, dieticians, and palliative care team for medical intervention. There are many barriers to provide psychosocial support. This puts them in jeopardy. Cancer care has been limited amidst the pandemic. And many caregivers are overwhelmed as they try to manage the crisis. The health care system is doing their best to help patients and caregivers, and our foundation is actively working with them to build hope.
Editor: How is your foundation coping with or managing some of these challenges?
Sameena: We are reaching out to patients to provide emotional support and guide them to various resources through digital medium. We also educate patients about maintaining hand hygiene and suggest they visit the nearby medical facility if any new symptoms develop such as flu. We have started a helpline facility so that patients can reach out to us for guidance related to COVID-19 and cancer. We are liaising with other stakeholders to provide medical consultation, food and transportation for cancer patients.
Another initiative is the launch of major social media campaigns to ensure continued blood platelet donations. Many citizens fear donating blood and platelets because they are concerned that doing so will make them weak and vulnerable to COVID-19. Many fear infection from visiting a donation facility. Through education and promotion of the donation program, we have maintained our donation levels.
Editor: What are your next-step plans and recommendations?
Sameena: Our plans include:
- Provide appropriate point of contact of various centres as per patient’s needs. This will prove especially useful when a patient has a medical emergency or needs to procure medicines. This will improve the efficacy of our health care system and reduce care gaps.
- Assist in online consultations by oncologists to address basic medical concerns of patients. This would help triage cases in need of immediate medical attention. Although many of our patients do not have Internet service, we can serve as a point of contact.
- After the lockdown phase, assist the hospital in developing a system to collaborate with NGOs and related resources. This would help in systematic delivery of services and due diligence of patient care.
- Explore digital mediums to broaden our reach to guide more and more cancer patients.
- Plan to maintain social distancing and safer avenues for prospective platelet donors.
Editor: Any final thoughts to share with our members?
Sameena: In the wake of this humanitarian outcry, it is imperative to address the unmet needs and concerns of cancer patients and the caregivers. We must also provide a helping hand to the health care system fighting day in day out against cancer and COVID-19. Gunvati Jagan Nath Kapoor Foundation is committed to this fight.
