As part of The Max Foundation and Friends of Max initiative to organise Patient Support Group Meetings for CML and GIST patients and their caregivers in different cities, a meeting was held on Sunday, 4th February 2024, in Bhubaneswar, which also happened to coincide with World Cancer Day.
Rabindra Kumar Gouda, the local City Chapter Leader, was interviewed and asked to share his views:
How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
The meeting provides patients an opportunity to meet and work with other CML patients coming from different parts of Odisha. This interaction empowers us, we no longer feel isolated when we are allowed to speak openly of our CML experiences. All patients feel liberated as soon as they know they don’t need to hide or feel stigmatised anymore.
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?
Since the inception of Odisha (then Orissa) PSGM I have been involved right from the planning right up to the execution stage of all meetings. Well ahead of the day we have close interactions with Sudha and other Max Foundation team members. For this meeting in particular, we especially planned a Volunteers’ Training Workshop to help Max identify and train a new band of FOM patient volunteers who can support the Bhubaneswar Chapter in its patient related activities. I am very pleased to share that the workshop went off well and we have had some patients who have come forward to volunteer. We will now follow up with these interested participants to counsel and help onboard them into the City Chapter Leader group of Odisha.
3. What would you like to see in future meetings?
We need to ensure that as Odisha City Chapter Leaders we are able to organise more Chai for Cancer Addas and Patient Support Group Meetings. This means all of us including the newly identified group of volunteers need to be further trained and empowered to do the same in our own capacities.
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?
It provides an excellent opportunity for patients to interact with multiple doctors on a single platform which otherwise is impossible to get.
Patients get clarity on different aspects of Cancer- TFR, nutrition, side effects of treatment just to name a few·
Last but not the least when patients hear the same message on “Strict compliance to treatment and regular follow up visits” from different doctors (and not necessarily just from their own) they understand its importance and know they cannot ignore it anymore. It simply gives them the confidence and the encouragement to be more compliant.
Verry nice meeting.i hope every year same date this meeting more strong