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With the help from our panelists, we put up a forum discussion on “Roles of Patient Support Groups in Disease Management – Max Family as a Case Study”.
I must tell you that in Malaysia, support group is not yet a common practice, and I am proud to share that Max Family is one of the best groups among blood related disorder diseases.
One of the most interesting parts was when one of the consultant haematologists stood up and shared his comment during questions session of the forum.
This was what he commented:
• MF & TMF are doing a great job from the past 4 years in patient support group – meetings, disease information, emotional support;
• However, most of the patients who attended support group meetings are regulars, are those who have already compliant to treatment;
• Our challenge is how to capture those patients who have never attended patient meetings, whom normally not compliant in their treatment;
• Why patients do not want to join patient group meetings? From his experience as a clinician for years, these group can be categorized into 2:
o Group 1: Don’t care attitude or Don’t know.
o Group 2: This group of people does not want to be seen as “patient”, due to stigma or taboo. Known as people diagnosed with cancer is something shameful.
We are doing so much for Group 1 people through phone calls, through inviting them to meetings, and we should be continuing the effort.
Group 2 is the real issue here.
This is related to awareness, awareness from community as a whole. We are not only talking about within patients, but also talking about raising awareness among the public, the community.
In our community today, the myths and taboo about cancer is still a big issue.
No employee will get fired because he is a diabetic patient. But we are hearing so much about cancer survivors unable to get a job because he is diagnosed with cancer.
A high-blood pressure person will have no problem sitting on the same table to eat with his friends; but what are the stories that we are hearing from our cancer friends? They are being isolated because friends think that cancer is going to spread by sitting side-by-side.
Awareness is the key today.
We need to start something, from somewhere, to start raise awareness beyond our patient groups!
Well said!
The comment from the haematologist was just so right for us to launched the Maximize Life Awareness Campaign.
This year, The Max Foundation is partnering with Max Family in Malaysia to run the Maximize Life Campaign with the theme: Cancer is Treatable. NO DISCRIMINATION.
There were also a few caregivers and survivors stood up and share their experience related to the perception that they have received when they were just newly diagnosed.
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We have created The Wall at the foyer of the meeting venue.
Patients/caregivers, physicians, nurses and even the waiters signed the tribute with their supporting messages and proudly paste on the wall.
We are also giving out car sticker as part of the campaign.
We are counting on your support in awareness creating effort.
You can help in this definitely - how? Simple!
- Sign the Tribute Wall & World Cancer Declaration here
- Get car sticker from us (write to maxmalaysia@themaxfoundation.org) & stick on your vehicle
- Get 10 of your friends to do the same!
Don't wait. Act now. This is not only cancer patients' issues.
It is mine, it is yours, it is our issue.
We do not want our next generation to continue to live in a community of cancer stigma, and being discriminate.
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The kick starts of the campaign, the positive energy, the bonding created from the meeting yesterday was the starting point of our mission – Maximize Life! Cancer is Treatable. NO DISCRIMINATION. Raise above Cancer!
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Thanks to these people who have worked so hard to make the day a success!
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