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Does your diabetes healthcare provider offer opportunities to meet with others impacted by T1D, or T1D support groups?
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I think KP offered a support group for people with diabetes which included Type ones and Type twos. Thru the UW Experimental College I offered a Type One support group in my home which was VERY rewarding. Maybe I could do that again by reserving the community room at my credit union or a Seattle Public Library community room or at University Unitarian Chirch.
I said, “No,” thinking of actual groups named “diabetic support.” However, they do put on monthly cooking events. The food portions, while small, are quite delicious. Plus they offer occasional lectures by experts in fields like pancreas transplants. (¬‿¬)
Not anymore due to COVID. The provider I see has referred women to the Diabetes Sisters PODS group that has been meeting regularly since 2010.
During the pandemic, the PODS meetings are on Zoom, but several ladies meet up at local restaurants to have lunch together and every 3 months cook a meal together in a D sister’s home.
I answered “other” because I helped start a pump group that my endo sponsored by having us meet at the office with him and the nurses once a month. Pumps were really new then and we all got a lot out of it. He eventually stopped offering it at the office so I hosted it where I worked. We had guest speakers and it went on for a couple of years but slowly petered out. I miss being able to chat with other pumpers as I only have one friend nearby who has diabetes and pumps. I enjoy being on Facebook groups but my fingers do get tired of walking!
Before Covid hit, they had monthly meetings with a speaker or company rep. After Covid hit, we all tried zooming but it didn’t work well. Lately I don’t think they have anything
I am quitting my endo because she handed over her job to a nurse practitioner and has never shown any interest in this patient — me. She had prescribed wrong size syringes— totally incompetent. My GP is sufficient for my diabetic care .
I attended a pre-pandemic TCOYD conference where I saw other people with diabetes for the first time since I moved to California in 1997, apart from one CDE I saw for a while I was surprised by how much I appreciated the camaraderie. Since then I’ve participated in TCOYD conferences online, which are great but not quite the same.
I answered NO but thinking back my endo back in the 80’s did recommend a group to me and I benefited from that. Since then I have not felt the need.
Not my current ones. The HMO at which I was at when originally diagnosed T2 had meetings for T2s and it was at that meeting that I realized I had been misdiagnosed. I was struggling on Tab and pork rinds and they were eating smaller sundaes.
At the next HMO they had meetings where we were supposed to help each other, while the staff held up the walls, but they (mis)used HIPAA regulations to limit the conversations and how much information we shared. Also, each of the wallholderuppers charged as if for an appointment.
I don’t know. I travel 2 hours (4 roundtrip) to see my Endo. There may be groups that meet at the group practice, but it would not really be practical for me to participate – at least, not in person.
I live in an area served by Adventist Healthcare and have receive no help setting up T1D meetings or supporting the needs of T1D vs T2D. I pushed at my endo the Diabetes ed center to set up or to support T1D meetings. Worse yet, the are very uninformed and unsupportive of implementing currently available. Moreover, when I asked that my endo needs access to pump data, I was tossed out of the Endo’s practice.
To offer such advice would mean getting involved with patient care. At least here in the Portland, Oregon area the few remaining endo practices don’t get involved with the individual. (IMHO)
I also live 2 hours away from my endocrinologist. It would not be practical and I was an RD, CDE and have a good friend with Type 1 who is a nurse and also was a CDE. Don’t really need to get together with a group.
They didn’t “offer”, I had to ask. I attended a couple times, but felt almost like an imposter because everyone was a lot younger and I was in my mid-sixties, and only diagnosed at age 61. To be clear, they were all welcoming, but since I had had to deal with it only a few years, felt embarrassed to speak of my issues.
My provider might offer opportunities like this, but she has never mentioned that opportunity with me.
No, and with all of my online communities, coupled with the time of covid, I wouldn’t expect her to. If someone asked her to help them connect, she definitely would on a very private basis.
As far as I know the hospital where my endo is doesn’t offer anything like this. Back in 2005 when I got my first pump, Medtronic offered local classes and I would go to those. It was nice meeting other Type 1s in person who were also pumping. The building that provided space for the classes was sold and as far as I know the classes stopped.
There is a local Meetup group but their meetings are usually not convenient for me.
Seven years ago my Diabetes Educator spent her own time and energy to establish a monthly T1 peer support group. Her employer, my HMO, offered zero support. She was not allowed to publicize the monthly meeting or given clinic space to hold them and my endo never mentioned they were even available. I was looking for a T1 support group. The only scheduled support groups available in Madison were specifically for T2. I asked about attending one of the groups and was told I had to be referred by my physician. After two years of effort the T1 monthly meetings were no longer offered. By that time I had “discovered” online support groups, but it’s definitely NOT the same.
I put “Don’t Know” because I’ve only had one in person visit with my new endocrinologist. Although I’ve been offered an appointment with the pump rep and diabetes educator, no one mentioned a support group. That doesn’t mean they don’t have one.
Looking at these comments, we need to start our own DA (Diabetics Anonymous) meetings!!
Don’t know, don’t care. If I run into someone who needs assistance I offer it. If I need any I know how and where to get it. It’s not this site.
At one time they had a very rare gathering for diabetics, offered by the health system not the office itself. I don’t think they have had any such gatherings for a long time- years, maybe a long time pre-covid even.
She used to offer a pump support group & a Diabetes support group. They have since been dismissed. I am in a local group for Type 1 women, age 18 and above. We’ve been having Zoom meetings for over a year now.
The results of this question are very surprising. And feels extremely disappointing to learn. T1D is a major Lifestyle disease state requiring patients to adjust all the time. It helps to speak with others who truly understand and can provide real solutions outside of an office setting.
I belong to a wonderful support group. It is so nice to be with people who understand life with Diabetes.
I chose other because my endo himself doesn’t. But he medically oversees the hospital’s diabetes center which does.
I don’t know, I have never asked. I attend a monthly support group for epilepsy that I had to ask my neurologist about a few decades ago. It’s possible there are T1D groups available.
Yes, they had just planned to begin this and then the pandemic hit. Hasn’t picked up again.
I have asked, there are no support groups for adults with T1D available.
would love if they did!
No, not at the present time. Over the past 30 years, the CDE at the endo’s office held a quarterly diabetes support group meeting but those stopped after the CDE retired.
I think this is an under-utilized support and educational opportunity. Some of the best “one off” experiences have been organized by pump vendors or diabetes tech vendors. Why is this so overlooked? I would pay a small fee or club fee if that’s what’s needed.