› Forums › General Melanoma Community › Is MPIP a greeting card or a platform for patient advocacy? Can’t we do both?
- This topic has 6 replies, 6 voices, and was last updated 6 years ago by
Mat.
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- March 18, 2018 at 4:56 pm
Is MPIP a greeting card or a platform for patient advocacy? Can’t we do both?
Having seen the debate for several days precipitated by the limits of the forum being pushed and at times exceeded, I think it is time to ask a basic question: Is this forum to function only as a source of emotional support? In other words, is it to be solely an “online greeting card”? One that can simply say: “So sorry.” “Hang in there!” or “Great!” – in other words – thoughts and prayers. Without a doubt support is incredibly important.
However, anyone who deals with serious medical conditions like melanoma knows that the interface with the medical system is difficult and fraught. Medical professionals and doctors in particular, are far from perfect. They are often time challenged and poor communicators. Everyone has learned that the best you can do by yourself and for your loved ones is to be your own advocate. Advocacy means that you attain as much knowledge and understanding as you can about your specific disease and you participate in shaping your care by taking an active role with those who care for you. You cannot have that knowledge and understanding without substantive information. In fact, those without a “medical” background often benefit from translation of clinical data into common sense. If there are individuals with the ability and willingness to digest and present the scientific and medical jargon into real life terms then I think they should be valued and encouraged. The inclusion of the sources is a real benefit as well. Not only to those with the interest in reading the data for themselves, but as a resource for their providers, and proof that the information is authentic. This is the key to advocacy. It is the way to help patients shape their own care. It is sharing knowledge and understanding. Providing information is not the same as telling or deciding for others what to do, it is enabling advocacy. To me that is an essential and unique role for this forum. Let the forum be the best that it can be!
Brent Morris, MD
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- March 18, 2018 at 8:57 pm
Could not agree more. Thanks! ~ Carol
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- March 19, 2018 at 1:31 am
Yes! I completely agree with you, Brent! Without doubt I have learned almost everything I know about melanoma and current treatments from this forum. Whenever I am faced with decisions, I come here and research the experiences of others or actually ask for advice. I am everlastingly grateful for the real life experts who share their knowledge!
Lear
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- March 19, 2018 at 4:36 pm
When I was initially provided with treatment options by my previous oncologist, thanks to the members of this board I was better able to understand the options, change oncologists and push for the ipi/nivo clinical trial, in fact throughout my treatment this board has provided me with a position of knowledge to discuss treatment options, I totally respect my oncologist, but I also want as much information as possible and this board, no key members of this board, Bubbles, Ed, etc are the best source of knowledge I've found.
In addition at the start of my treatment I asked my oncologist about a melanoma support group, apparently they don't encourage trial patients to compare notes! So the members of this board have become that support group and I thank everyone that have me helped through the scarier times.
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- March 19, 2018 at 6:28 pm
Ditto ditto. The information provided by knowledgable forum members has allowed me and my husband to advocate for him.
Mistakes by doctors contributed to my mother's early death, and undiagnosed health conditions or complaints not taken seriously enough had consequences, some serious, for me and family members. Even terrific doctors make mistakes. They are human. Sometimes doctors trying their best misread what a patient wants or is pressed for time so doesn't present an option. So it's up to us to partner with them – whether some like it or not – and advocate for ourselves, our family members, anyone we care about.
Some people come here terrified and confused. They don't know which way to turn. Bubbles' primer, which another caring forum member pointed me to, helped ground me, as did umpteen posts by many members.
Bubbles, Ed and Janner are names that pop up a lot. There are others. And it appears from reading hundreds of current and past posts, that a small number of people may resent the thanks and kudos they receive. But that's not limited to here; I think it happens pretty often in different settings for a variety of reasons.
My heartfelt wish is that that never deters the knowledgable forum members from posting and helping us to the next steps. If you weren't here when I came on board, I don't know where I'd be, but it would be in a worse place emotionally, when grappling with info and options, in feeling settled about our plan, in determining questions and red flags. You've helped us learn a new language. Certainly our doctors and nurses do not have the time to do everything, although my husband and I are also lucky and grateful to have found a terrific medical team.
Just my take. YMMV.
Beth
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- March 20, 2018 at 1:29 am
Wow! I couldn't remember what or when I had first posted on mpip! So….I looked back. It was on a discussion regarding "Barriers to Optimal Care" in 2013: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/barriers-optimal-care#comment-55016
Here is a bit of what I said: "So…this does put the patient back at square one. You will be forced to be your own best advocate….just as you are when getting your car fixed or your home repaired. That is very hard when you are sick and frightened and that is where boards like this one are so helpful. This will also put the onus on the patient, who hopefully will DEMAND the assistance of their local onc, to find the nearest melanoma specialist. Again, boards like this one are invaluable in helping these patients get in touch with groups who can help them with financial issues and logistics. And…unfortunately with a disease like melanoma…persistence, hopefully, over many years, will be required. The support from other peeps on boards like this one helps with that as well."
Yep. Advocacy. That's what I said then, and what I say now. I have lost too many dear sweet friends to this disease. I have watched too many used car salesmen types…try to pawn off their latest scheme. Some to push their product. Some because they fell for the game…hook, line and sinker. Some because they don't know any better. Back in the "wild, wild west of melanoma" – when there was no viable treatment…and trust me…I was first diagnosed in 2003…We Were Desperate!!!!!!! We have come a long way baby!!! But….not nearly far enough! And I??? I am where I have always been. But, with a new by-line: "Enabling Advocacy!" Which is the only thing I ever believed in. Love and luck to you all. Celeste
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