On Saturday, July 27, 2024 the Friends of Max (FOM) organised a Support Group Meeting for CML patients at Sarvodaya Healthcare in Faridabad. Shashi Kankani, attending Delhi FOM City Chapter Leader, was interviewed and asked to share her views:
1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
These gatherings have a positive impact on all the individuals who are attending it. Be it patient or caregiver or a doctor. Jab patient enter karta hai tab uski feeling hoti hai ki ‘mere se jyada pareshani kisi ko nahi hai ‘or ‘why me’ but as the meeting progresses that emotion changes to “duniya main kitne gham hai , mera gham kitna kam hai”
Connecting with the FOM Community always brings smiles and fills your heart with positivity.
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?
In these 20 years the number of patients and caregivers attending the meetings have increased. Especially the number of caregivers attending the meeting has increased in the sense that almost every patient is accompanied with a family member. People have become mature enough to come out in open and discuss CML. In the discussions and workshops, it is noticeable that these meetings have had an impact. Almost every patient comes out and asks their doubts and the dependence on the moderator to ask questions is greatly reduced. Everyone participates enthusiastically in the workshops.
3. What would you like to see in future meetings?
The meetings are always organised well but there is always a scope for betterment. The time given to the patients sharing their journey and the time for panel discussion can be increased. We can increase our reach out to add more patients our meetings. More meetings should be conducted so that more and more patients and their caregivers become aware of the treatment options available to them.
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?
The support group meetings always have a positive impact on patients. I have known a patient for years who has never attended these meetings, instead has his caregivers attend them. Over the years it definitely has had an impact that this time not only did the patient attend the meeting personally but actively took part in each activity- be it registration or participating in the workshop. Further he also promised to attend all the future meetings.
One more instance is one of our patients who was a part of our programme but had left our group due to some problem but continued to follow FOM FB page. He came to know of the meeting and came for it. This is the impact of our support group.
Very inormative Keep up the good work