A Support Group Meeting for those impacted by Chronic Myeloid Leukemia (CML) and Gastrointestinal Stromal Tumour (GIST) was held on 24 January in Nagpur. The meeting was attended by 58 patients, caregivers alongside physicians, The Max Foundation India team, FOM Trustee Nirmesh Prakash and our City Chapter Leaders from Nagpur.
Ramanathan Seshadri, who has been an integral part of the old guard of FOM since the last 20 years and more, was invited to share his insights on the gathering.
Here is what he had to say:
1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
The inaugural talk by Dr. A. D. Ganju lucidly explained the vital clinical aspects of CML and comprehensively addressed the various challenges involved in managing the disease. Key topics included awareness of dos and don’ts, managing recurring side effects, mitigating complications arising from CML, and the importance of adherence to treatment protocols.
Such issues are effectively addressed through these meetings which are organized from time to time by patient support groups like Friends of Max. These gatherings provide a valuable platform for patients to share their experiences and for doctors to explain current treatment protocols, offering practical insights into best practices for disease management.
2. Now it has been more than 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?
Such meetings are well structured and encourage meaningful patient participation. Increased patient engagement is clearly evident, leading to a broader understanding of the various nuances that can be adopted and practiced for better disease management.
In this context, it may be beneficial to allocate additional time for group activities such as discussions, exercises, and interactive games focused on different aspects of disease management. Additionally, organizing small group visits to cancer wards in clinics or hospitals to offer social support could be an innovative social initiative.
3. What would you like to see in future meetings?
Future meetings can be more theme based touching specific grey areas or recommended best practices to promote increased patient interaction. An interface through social media could also be worked out to enable exchanges among patients with similar issues.
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?
During initial phases of my tryst with CML, I used to have an incorrect perception on the compliance of daily treatment. I used to often miss taking my drugs. At a later stage too, I had misconceptions on discontinuation of the drug upon getting favourable results. I used my discretion and carried out some alterations at will. It was an eye opener to me, when in one of the patient group meetings in Kolkata, doctors explained the protocols in vogue on above matters and gave some cases where recurrence of the condition had occurred while deviating from the protocol.
There are many such takeaways for a patient in such gatherings.
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