A CML and GIST Patient Support Group Meeting was organized by The Max Foundation for Friends of Max, on Saturday, 6 April 2024, at Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow. Arun Bhargava, Kanpur FOM City Chapter Leader, was interviewed and asked to share his views:
1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
At meetings like these patients with their caregivers and family feel a sense of relief to know that they are not alone in this CML journey. Talking and sharing of similar experiences makes them feel more confident and hopeful. However, there is also a feeling of empathy and compassion that one encounters while meeting patients from diverse socio-economic strata. We all know facing a CML diagnosis can be a challenge, but when it is also compounded by a financial crunch, I am sure it makes it even more difficult.
2. Now it has been 20 years since we have been doing patient support group meetings, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing?
Our first meeting was in year 2007 held in a small room at the famous MB Club of Lucknow. Back then those were the formative years of Friends of Max and we were still learning. Cut from there to the recent Patient Support Group Meeting held at SGPGI Lucknow on 6 April 2024, FOM has come a long way. From audio visual aids to conducting workshops to designing systems and processes to ensure meetings are conducted smoothly, are all in place. These are instrumental in conducting effective meetings and delivering patient centered outcomes. The current meeting was no different. We had many patients coming from in and around Lucknow and leading physicians who attended the meeting to make it a grand success.
3. What would you like to see in future meetings?
During the meeting I met many patients who travel from far flung areas of UP to visit their treating physicians at Tata Memorial Hospital, Mumbai, because they feel it is only there that they will receive the right treatment. With SGPGI in Lucknow, having the latest state of art infrastructure and very qualified oncologists and physicians, I would like to see more and more physicians from SGPGI take in more of such patients. This will enable the patients to receive the best treatment without having to incur the extra cost towards travel, lodging and boarding. I think this is an area that I would like FOM to actively engage in, in the future.
4. In your experience with Support Group meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?
At the meeting I met an elderly gentleman around 70+ years old. He had come with his daughter, CML patient, who had recently lost her husband. He was naturally worried, but after meeting the FOM family, some of his anxiety reduced. I have shared my number with him and like him with many others. Today I receive so many calls from patients and I hope, spending those few minutes answering their doubts and questions I am able to console and comfort them and do my duty as a FOM City Chapter Leader.
