Where Do I Go From Here?

[BattleScars]

I can't believe how I've been treated by my doctors and their staff. I'm at a point where I don't feel safe as a patient and I don't even know even know where to file a complaint. I don't want to turn this into a long story so I'll try my best to sum it up. If anyone has any questions I can elaborate further. 

So I currently take 13 prescribed medications. There is a major communication breakdown with my local pharmacy and MGH and my doctors. I keep running out of meds. A few months ago I ran out of my high blood pressure medication for nearly a week and my BP spiked from average 125/75 to 150/100. For a reason I don't understand my doctor's office refuses to accept basic things like faxes. When I have no refills I run out completely. It was happening when I was using Target and I thought it was just them. I switched to CVS and I'm encountering the same problems. CVS is usually really good about having my refills ready for pickup every month but their hands are tied if there is no valid Rx. I've learned to look at every bottle but I still got burned this time because I was told to take half a pill so my Rx expired and I didn't know it because the bottle says there are 6 refills. CVS sends a fax but that never works. I call in to my drs office and I'm put on hold sometimes up to 45 min before I can even talk to a staff member. I had once again completely ran out of my medication so I called yesterday at 9:30am. The lady was very nice and said she would tell them to put a rush on the prescription and it would be ready by that afternoon. 6pm last night I go to pick it up and there's nothing there.

Today I call my drs office and I get a really rude lady. I attempted to explain the situation and she just starts yelling at me,"Sir, sir, you need to be patient, it takes us 48 hours to refill medication." She wouldn't even let me get a word in and then rudely hung up on me. I called back and asked for her supervisor and she refused to put me through. After nearly 15 minutes of going back and forth she finally puts me through to a lady 10 times ruder than here! This lady accused me of screaming, I wasn't even raising my voice. I was a bit firm by the point but who wouldn't be? Since she kept accusing me of screaming I said, "OK look, I'll just record this call so I can prove I'm being nothing but polite." and she hung up on me.  OK I get it, you can't record someone and I probably took it too far at that point. What's my next step? I called the patient advocacy office of the hospital. Believe it or not this lady was even ruder! She kept blaming me saying I needed to set up a medication plan with my dr and when I asked for her name she refused to give it to me. I asked to file a report or a grievance and she also refused and then hung up on me. Later I called from a different number and got a different lady and I was thinking Thank God. She started off nice and then started accusing me of being rude to the other girl and hung up on me.

I know I got irritated but I know better than to start a conversation with someone with a rude tone or yelling at them. 9 times out of 10 that will get you nowhere. I also know people in Boston (I'm not from here) are extremely rude in general and can be unprofessional and nasty but I have never experienced anything like this. Now I know I can leave and seek treatment someplace else and even my pharmacist recommended that but I want to file a complaint but I don't think anyone will listen. There are several other issues about my care that are going on here at MGH too that have led me to this point but this is already long-winded enough but it has to do with me as a patient being labled "in-compliant" if I question anything, or stop taking a medication because of the side effects. Obviously I know and I would never just stop taking any anti rejection drug without consulting my drs when I get a transplant. That's not the same thing as stopping a gout medication because it was causing flareups so bad I couldn't walk.

Honestly, where do I go from here. If the patient advocacy office won't listen, who will? I'm more concerned for future patients and their quality of care because at this point I'm leaving for sure.   

[BattleScars]

Small update: So I finally figured out why my meds aren't getting refilled. MGH told me they don't accept Rx requests by fax, they just aren't "equipped" for that. LMAO! Are you freakin' kidding me? What year is this again? 2013? My phone can do a thousand things that a doctors office can't do? Yet when I go in for my appointments I am greeted by a computer instead of a human. Go figure.

[boswife]

Things like this................. Well, things like this we DONT need!!  As if having the 'need' for the crap we HAVE to get isnt bad enough, but then to go through stuff like this is a shame.  I can only say 'sorry' and hope that it's better now..  Wish i had answers 

[Rerun]

Hang in there.....

[BattleScars]

I'm trying to stay positive. Sometimes you have to do what you can if things are in your control and can change things. I guess I'm just scared of change, new doctors, nurses, ect because they will have their own way of doing things. There's been a few people at MGH that have really helped me. I'm sad to have to leave them. This is my only experience with dialysis, I was wondering if this kind of treatment is par for the course. One thing MGH doctors keep saying to make me scared to make a change is "the grass is greener on the other side." They also insist they have top notch medical care I won't receive anywhere else lol.

[boswife]

I dont like change either   I want things to work as they shoulld and will usually do as you did and try real hard first.  It's just a shame and is it a 'have to ' change at this time, or purely your choice to do so.  Wishing you lots of luck and mabie it's gonna turn out great.  Sometimes we're forced into something and find that we're soooooooooo glad we were.   

[Emerson Burick]

Small update: So I finally figured out why my meds aren't getting refilled. MGH told me they don't accept Rx requests by fax, they just aren't "equipped" for that. LMAO! Are you freakin' kidding me? What year is this again? 2013? My phone can do a thousand things that a doctors office can't do? Yet when I go in for my appointments I am greeted by a computer instead of a human. Go figure.

I also report to MGH and have been pissed off at them and Medco (and Accredo, the redheaded stepchild pharmacy) plenty of times, for this reason. I think the most annoying part is when Medco claims something will work and then it doesn't because the systems don't interface. (And good luck trying to have drugs sent to you at your work address--unless you get their damned address confirmation call they'll cancel that order on you.)

Through much trial and error, I have found the following solution. If you go to partners.org you can get online access to the email and messaging system that the doctors use at MGH. (There's a newer one that they've been pushing at patients lately, but I was using this before they rolled that one out. I think they do pretty much the same stuff. You can also use the site to see your lab results going back years and see what upcoming appointments you have, which is pretty cool.) In any event, I use that site to send a new Rx request to my GP, not my nephrologist. She always gets them sent off quickly. Problem solved. Obviously, the success of this strategy will depend on your relationship with your GP.

[Alex C.]

Time to find a new doctor.

[CebuShan]

I would suggest first try Emerson's solution. If that doesn't work, definitely start looking elsewhere. If it's bad enough that you are concerned for your health, a change would probably be for the best. I am really blessed! My GP, Neph, Pharmacy & Hospital all work together very well! Best of luck to you!

[amanda100wilson]

Do you see your neph. every month?  can't you adk for a prescription at that time?  Also suggest that you look ahead and allow plenty of time for a refill, just don't rely on a faxed prescription since they don't seem to do it.  Ask what technology they DO use for prescriptions.  Faxes are old technology and a lot of people in business no longer use them (even if many doctors and hospitals do)

You cannot be unprodessional since you are not A PROFESSIONAL (not shouting, just emphasising) .  you are a patient, they are the professionals and so should be so.

[BattleScars]

Small update: So I finally figured out why my meds aren't getting refilled. MGH told me they don't accept Rx requests by fax, they just aren't "equipped" for that. LMAO! Are you freakin' kidding me? What year is this again? 2013? My phone can do a thousand things that a doctors office can't do? Yet when I go in for my appointments I am greeted by a computer instead of a human. Go figure.

I also report to MGH and have been pissed off at them and Medco (and Accredo, the redheaded stepchild pharmacy) plenty of times, for this reason. I think the most annoying part is when Medco claims something will work and then it doesn't because the systems don't interface. (And good luck trying to have drugs sent to you at your work address--unless you get their damned address confirmation call they'll cancel that order on you.)

Through much trial and error, I have found the following solution. If you go to partners.org you can get online access to the email and messaging system that the doctors use at MGH. (There's a newer one that they've been pushing at patients lately, but I was using this before they rolled that one out. I think they do pretty much the same stuff. You can also use the site to see your lab results going back years and see what upcoming appointments you have, which is pretty cool.) In any event, I use that site to send a new Rx request to my GP, not my nephrologist. She always gets them sent off quickly. Problem solved. Obviously, the success of this strategy will depend on your relationship with your GP.

Awesome advice. I'll admit I've been slow to adapt to the patient gateway system but it does help a lot as far as keeping up with appointments and emailing drs. I just sent my first email to my GP yesterday. Hopefully it goes well.

[BattleScars]

Do you see your neph. every month?  can't you adk for a prescription at that time?  Also suggest that you look ahead and allow plenty of time for a refill, just don't rely on a faxed prescription since they don't seem to do it.  Ask what technology they DO use for prescriptions.  Faxes are old technology and a lot of people in business no longer use them (even if many doctors and hospitals do)

You cannot be unprodessional since you are not A PROFESSIONAL (not shouting, just emphasising) .  you are a patient, they are the professionals and so should be so.

That's a sore subject as well lol. I haven't been making all my appointments and that's on me. Not trying to make excuses, just life gets in the way. A few months ago I missed my monthly appointment because of the flu. I was in bed and could hardly move and I have a long way to travel to get to my appointment. Two months before that a major snowstorm shut down the state. They wouldn't even let anyone drive and our car wouldn't have made it far in 24 inches of snow lol. So I've went at least every other month and here's why. They schedule my appoinments out almost a year in advance. If something comes up I can't change it because they are so rigid. I can go in and get my labs done but my neph won't see me unless it my scheduled appointment. When I do see him I do mention the meds but I feel like it's hit and miss. I almost always walk out of there missing something important. I don't know how it is for other PD patients but they make that monthly appt take up at least half the day and my brain doesn't work as well as it used to. I get forgetful sometimes. I do try to write down questions but sometimes I forget to do that lol. I feel like I have brain fog a lot the past few years.

[amanda100wilson]

My advice is to write down everything you want to say in your appointment.  That way things that you want to say should not be overlooked.  It does have to be a two-way process, but speaking as someone with twenty plus years of all this S***, you do need to find a doctor that you 'gel' with, otherwise it is an uphill struggle, particularly fi you don't suffer fools gladly and you have a doctor that doesn't listen properly.  No-one is perfect and there are some excellent doctors out there.  A lot fall somewhere in between.

If you are wanting to get a transplant, I would put those absences in writing.  You don't want to be denied because you have been branded non-compliant.

My doctor schedules the next visit at my previous appointment,  All my doctors have worked this way.  If they are scheduling that far ahead, either they are very good and therefore very popular, or they just lack flexibility.  Either way. it is to your detriment.  Is this a hospital nephrology unit?  If so, it may be better to find one out in the general community.

Iy is fairly standard to,have to give 48 hours notice for getting a new prescription, so it is up to you to plan ahead, and order in time.  Hopefully, the 0e-mail system will work for you.  It just sounds to me that they are up-to-date with technology.  My husband is surprised when he hears that doctors and hospitals still use fax machines, since they rarely are in other businesses.

[jeannea]

Unfortunately, most doctors require 48-72 hours to send in a prescription refill. And I am not trying to make things worse but you cannot depend on your pharmacy to do your refills.

If you need help learning how to read the label on the bottle, ask the pharmacist for help. It doesn't just say 3 refills. It says 3 refills before June 12, 2013 or whatever the date is. You need to be in charge of your meds, not your pharmacy or your doc. Keep on top of when each can be refilled and when you need to call your doctor's office.

I use a set of pill boxes labeled Sun-Sat. I fill the whole week at once. It doesn't matter which day you fill them on as long as you do the whole week. Then when you fill the week and only have a couple pills left in that bottle it is time to refill and you have a week for the doctor's office to get it done.

I'm sorry they were yelling at you. It's almost impossible not to get you or the receptionist upset.

Unfortunately you have to be the one to take care of your health. No one else will.

[Lexxtech18]

Small update: So I finally figured out why my meds aren't getting refilled. MGH told me they don't accept Rx requests by fax, they just aren't "equipped" for that. LMAO! Are you freakin' kidding me? What year is this again? 2013? My phone can do a thousand things that a doctors office can't do? Yet when I go in for my appointments I am greeted by a computer instead of a human. Go figure.

I also report to MGH and have been pissed off at them and Medco (and Accredo, the redheaded stepchild pharmacy) plenty of times, for this reason. I think the most annoying part is when Medco claims something will work and then it doesn't because the systems don't interface. (And good luck trying to have drugs sent to you at your work address--unless you get their damned address confirmation call they'll cancel that order on you.)

Through much trial and error, I have found the following solution. If you go to partners.org you can get online access to the email and messaging system that the doctors use at MGH. (There's a newer one that they've been pushing at patients lately, but I was using this before they rolled that one out. I think they do pretty much the same stuff. You can also use the site to see your lab results going back years and see what upcoming appointments you have, which is pretty cool.) In any event, I use that site to send a new Rx request to my GP, not my nephrologist. She always gets them sent off quickly. Problem solved. Obviously, the success of this strategy will depend on your relationship with your GP.

Sounds like MyChart. Handy little tool that is.

BattleScars - I'm so sorry you've been treated this way. As a healthcare worker and a dialysis patient, I see both sides of the coin day in and day out. I have to think as a healthcare professional and as a patient and sometimes it's hard to switch between the two. But there is still no reason for any healthcare professional to be so rude as to accuse and/or hang up on you. That would be grounds for some sort of disciplinary action where I work, on the spot. Healthcare is just like any other service job, if it weren't for the patients, they'd have no job. I hope you can find a better doctor's office soon. We have enough crap to deal with as is just living day to day.

[Riki]

I don't know how it is for other PD patients but they make that monthly appt take up at least half the day and my brain doesn't work as well as it used to. I get forgetful sometimes. I do try to write down questions but sometimes I forget to do that lol. I feel like I have brain fog a lot the past few years.

What I did, and still do, when I have appointments, is take my mother with me, so if I forget something, generally she will remember.  getting prescriptions isn't as much of a hassle as it used to be, since I'm in centre now and I see the neph at least once a week

[Wildrose]

Ugh, sounds frustrating! I hope it all gets worked out for you!

[BattleScars]

Unfortunately, most doctors require 48-72 hours to send in a prescription refill. And I am not trying to make things worse but you cannot depend on your pharmacy to do your refills.

If you need help learning how to read the label on the bottle, ask the pharmacist for help. It doesn't just say 3 refills. It says 3 refills before June 12, 2013 or whatever the date is. You need to be in charge of your meds, not your pharmacy or your doc. Keep on top of when each can be refilled and when you need to call your doctor's office.

I use a set of pill boxes labeled Sun-Sat. I fill the whole week at once. It doesn't matter which day you fill them on as long as you do the whole week. Then when you fill the week and only have a couple pills left in that bottle it is time to refill and you have a week for the doctor's office to get it done.

I'm sorry they were yelling at you. It's almost impossible not to get you or the receptionist upset.

Unfortunately you have to be the one to take care of your health. No one else will.

I do admit some of the errors going on with my meds are my fault. I don't ignore my refills on purpose, life kinda comes up, and I'm fairly new to this, I've never taken so many meds in my life. You learn a lot as you go it seems and had I known a few things I could have prevented some of this. I probably should spend a little more time here on IHD reading how other do this stuff. My GP called me on Friday and spent 35 minutes with me on the phone. I love my dr and he's a big reason why I've stuck it out at MGH for so long. He explained that I can actually request Rx refills through their patient gateway system instead of calling in. That's huge because I can avoid the 30 min waiting on hold and the rude nurses. He also said I could actually request my nurse, didn't even know I had a personal nurse that works directly with my GP, had I known that I would have just requested her all along.

I got some sad news though too. My dr is a resident and he's moving to Florida at the end of June. I'll be getting a new GP. He wants me to look him up when I do get my transplant and I plan on it. This guy was awesome. He was always an advocate for me and helped me when I didn't have many places to turn. I don't have great family support but he helped me from the very beginning when I was told I would need dialysis until now. He also took time out of his busy schedule and life to call me, even sometimes late at night when I was struggling. I guess this is my ticket out of MGH now that I have to get a new GP. It's not so much the med refill problems, it's the disrespect and how the transplant team has treated me. They don't deserve any more of my dollars.