Wednesday, April 23, 2014

Having a Voice in the Medical Community

One of the reasons that we picked up and moved from Houston to Denver was because of the severe lack of medical care that I was receiving.  I almost died on a few occasions, all because a few doctors put their pride and arrogance above my viewpoints and what was happening with my body.

It was like the child's game of hot potato:  the potato quickly gets passed around in a circle, and when the song is over, you hope that you're not the one left holding it.  These doctors were passing me around from one specialist to another, back and forth to each other, all the while hoping that when the "song ended," they wouldn't be the ones stuck with me.  One hospital and group of doctors actually refused to work with me anymore because I was too difficult and they didn't want to end up stuck with me.  They were irrationally angry with me because what they were doing just wasn't working.

This was extremely disheartening.  I felt helpless, scared, and alone.  There was no one to advocate for me, and no one was listening.

There is a project called Rare Patient Voice. They do surveys and interviews for people with rare diseases about their medical care, quality, and services. This is not just for people who have the condition, but also for their caregivers as well. Each time you fill out a questionnaire or survey, you get a bit of financial compensation as well.  When you sign up, you also get a $5 gift card for Amazon, as does the person who referred you.

These surveys pay well.  Recently, Ulcerative Colitis patients earned $250 cash (well, a check) for completing one survey.  I personally



The information from these surveys is used to improve the healthcare systems.  They work with pharmaceutical manufacturers, advocacy groups and charitable organizations, in order to change healthcare one patient at a time.

I am passing this along, not just because of the gift cards, but also because after all of my experiences with the medical community in the last two three years.  I have been hospitalized 30 times, so I have met many people who have had a wide variety of encounters with the medical world. I think it's extremely important that those experiences be heard. There is a lot that is wrong (and right) with health care, especially for those who have less-common conditions. I'm hoping that this is one way for voices to be heard so that changes can be made.

When you first sign up, you get a $10 Amazon gift card.  (Note:  They now give $5 gift cards instead.) Then anyone who signs up and puts your name as a referral, you both get another $10 gift card. I got $20 because I signed up and then my husband signed up under me as my caregiver. I have taken several surveys, as well as phone interviews and have been compensated well:  the most was $150 for a one hour phone conversation about a picture I drew depicting my life's journey!  I also have not received any spam or been contacted inappropriately through this.

So I wanted to pass this on to you and invite you to sign up. Even if nothing comes from the surveys themselves, at least you get a free $10 gift card if you qualify. I haven't gotten any spam, but if that is something you are worried about, you can set up a free second email address and use that.  That's what I did - I also use that email address for Viewpoints.com and Swagbucks.com, through which in the last year I've gotten close to $300 in free Amazon gift cards - if you're interested in that, ask me about it.  (To sign up for Swagbucks, please use THIS LINK HERE)

SOME of the MANY diseases that qualify as "rare" are:
Bleeding Disorders
Multiple Sclerosis (MS)
Cystic Fibrosis
Sickle Cell Disease
Huntington’s Disease
Pulmonary Arterial Hypertension (PAH)
Waldenstrom’s Macroglobulinemia (WM)
Lupus
Gaucher
Duchenne Muscular Dystrophy
Hepatitis C
Crohn's Disease/Ulcerative Colitis

If you think that either you or the person you care for has something that qualifies as rare, you can apply and then explain why you think you qualify.  There are so many more conditions out there that are more rare than those listed here.

If you do decide to sign up, please make sure to put Tiffany Thomas with an email address of scifigal2k@gmail.com as your referral so I can get credit for it. You sign up at https://www.rarepatientvoice.com/sign-up/

Remember, this is about having a voice.  A voice for those who are to ill to speak for themselves.

10 comments:

  1. Wow. Houston is supposed to have this reputation of having some of the best medical care. I am so sorry about what you went through in Houston. :(

    I have a friend who is facing a possible MS diagnosis, so I'll pass this along to her.

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  2. I'm sorry to harp on Tiffany's excellent blog post about having your voice heard when you are dealing with a difficult disease, but I have to defend my city. Houston has the largest medical center in the world. Tiffany didn't actually live in Houston, but a far suburb. I think Tiffany would agree that she could have gotten better care if she drove 40 miles into the city. That's not to say she would have found that care to be acceptable anyway.

    Just because Houston has a very large medical center, it doesn't mean that all diseases are equal. If you have cancer or heart disease, you really can't find a better place to be than the Texas Medical Center in Houston. Bowel disease is not as well covered here. It doesn't seem to have the critical mass in terms of medical research or patient population to rise above the noise level in this gigantic medical complex.

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    1. Hi Karen,

      I don't mean to put down Houston - there are some great medical hospitals and doctors there. I had a couple of them. But you are not very familiar with my treatments down there, or you would know that I WAS going to the medical center downtown, not just to hospitals out in my suburb. With traffic, it's not just a 40 minute drive to the med center - it's actually closer an hour and a half. One of the times I was in the Methodist Hospital at the Medical Center, my doctor tried to directly admit me and I spent over 8 hours waiting to get a room. I was so sick I couldn't sit up, and had to lay on the floor in the reception area of the hospital until they even got me a gurney.

      I went to five different hospitals in Houston in an attempt to find doctors and care that could help me. While I had some really good specialists here and there (my GI, for example), most of them were not very good in dealing with my conditions. Some of them was because it was just out of their league (by their own admittance), but some of them refused to accept that and just did not want to deal with it.

      An example of this was in December when I had an abscess. It formed overnight, and I discovered it on a Friday morning. I got into a doctor that afternoon, and he told me that it was just a swollen gland and that I needed to stop being so dramatic about my health and sent me home. 24 hours later, I was in emergency surgery, went into septic shock, and was close to dying. Afterwards he told me that it happened because I was just having anxiety and if I'd just calm down, all my symptoms would go away.

      This is one of about a half-dozen examples I can come up with off the top of my head. And many of them were downtown in the med center hospitals.

      You make an excellent point; there is absolutely wonderful care for more mainstream conditions, like heart disease and cancer. But for my conditions, I received very poor care that led to worsening conditions and problems. Half of the hospitalizations were a direct result of poor doctor care and health management on their part, even when I specifically told them what was wrong based on my previous experience with my body and condition.

      I don't mean to put down Houston medical as a whole. But there were definitely very negative aspects of it that I experienced, and those are the things that I would hope can be fixed through patients being able to have more of a voice.

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  3. I'm a victim of the Houston medical community. They are ALL downtown and with MS that's make it damn near impossible to get there. My little burb doesn't even offer a bus! Everything in Texas is basically you gotta drive a car. The Maxine Messenger Center is supposed to be great for MS but I have no personal experience with them. My current neuro is pushing for another MRI (which I find useless since we KNOW I have MS). If my symptoms are worse then golly gee I must be relapsing - duh. It doesn't cost another $6,000 to figure it out.

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    1. I had the same problem with trying to get downtown to get to the hospital - the drive is too difficult when you're in the middle of a flare of a condition. For me, it's bloody diarrhea 8 times in an hour, plus vomiting. How am I supposed to make it through the traffic to get there? So you go to the nearest hospital, but then it's not the good doctors. You can try to get transferred from one hospital to another, but only if insurance and doctors will let you, and they wouldn't let me even though I'd beg so that I could have my GI be in charge of my care. The drive is okay for a regular appointment (kind of), but not for the ER visits, and those are the times when you really need the good specialists!

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  4. It seems no matter where people are in the country they often complain about the local healthcare options and want to go out of the area for care. I realize some hospitals aren't equipped to deal with certain things while other a synonymous with treating a certain disease. I live in a small town in Pennsylvania and work at the local hospital. Pittsburgh is the closest major city and I hear pt say "I'm not getting my back done here I'm going to Pittsburgh" or whatever. On the other end I've had people say "I'm not going to Pittsburgh they messed up my (fill in the blank) before." Still others go to Hershey. I think it's a matter of finding the right doctor for you. Between specialties, years of experience, access to the right equipment in the hospitals, insurances, and personal preferences the same combo isn't going to work for every person. Even with medications different bodies responds differently to different treatments. I don't know your story, I don't want you to think I'm judging. I realized there are some that are just downright negligent too. It took me 4 years and 3 different doctors until I finally received a diagnoses for myself and was able to start some sort of treatments to start helping. Even with that meds needed to be adjusted and there is patient responsibility on my part to makes sure I wasn't consuming trigger foods/drinks and figure out what triggers for me. Also before I spoke too soon I wanted to keep an open mind about treatment. I talked to friends and family members. I have an aunt with Crohn's and a coworker with ulcerative colitis. I took every suggestion I thought would be ok to try. One told her friend swears by drinking a gallon of lemon water a day and it helped her greatly So I tried it. I figured if nothing else I'd be getting my water intake in. Probiotics were suggested to me but the didn't seem to help me much where others said it did help them. Another realization is knowing that sometimes you have to give things a little time to make a difference. Swallowing a pill or trying a different diet for a few days, you most likely won't notice a difference right away. Long term, though sometimes you do. That was the case for me in the one medication I was using. Didn't seem to do much the first couple months, they doubled the dose and after a month I felt about 80% better

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  5. Thank you for sharing this site! I am sorry to hear you have Crohn's Disease. My friend at Macy's had it. She was a newlywed and finding it hard to deal with. I think it's frustrating having an "invisible" condition. I wish you comfortable days and someday soon, a cure!
    Cheers,
    Elyse

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    1. Oh thank you, you are just so sweet. I am sorry for what your friend is going through and I hope that she feels better.

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  6. I would love to join I spent half an hour trying to fill in their form and it kept bouncing back at me love dawn

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    1. Oh that's frustrating! If you want, you can email the CEO Wes Michael and let him know you want to join but that the form isn't working for you for some reason. He is really nice, and he is very prompt on his emails. Just let him know that I (Tiffany Thomas) said that you could email him and you'd like to sign up under me. He might just let you send him the information via email, or he will fix the problem that's causing it.
      Here is his email:
      wes.michael@rarepatientvoice@...

      I will also let him know that there has been a problem.

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