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Your Clinic Experience: What Would You Like to Improve?

Discussion in 'Parents of Children with Type 1' started by Jeff, Nov 8, 2016.

  1. Jeff

    Jeff Founder, CWD

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    I'm part of a program at the T1D Exchange that is working to improve the clinic visit experience for families with type 1, both parents and kids, as well as adults with type 1. While I can share my perspective, I'd like to hear from you, the CWD family, about things that work well at your clinic and things that you would like to see improved.

    Thank you in advance for sharing your thoughts.
     
  2. Beach bum

    Beach bum Approved members

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    We go to a large diabetes clinic, so they definitely are more equipped to offer everything a patient needs.
    The things we find helpful are/was child life specialist for the early years, social worker that will work with whole family, dietician to help you with diet.
    We also have a dedicated team. So we see our doctor/nurse on a rotating schedule. We also never leave without a future appointment. That is big.
    We also have many opportunities to participate in studies, and we've taken part in a few.
     
  3. samson

    samson Approved members

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    We like our clinic, which is very well regarded. The one thing I wish is that they were more plugged into clinical trials.
     
  4. Snowflake

    Snowflake Approved members

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    It's a big ordeal for us to drive to our clinic, requiring a half day off school and work. So I wish the visits provided more value than just a review of A1C and pump settings with the endo or CDE.

    Those are important conversations, but I do feel like we need other supports around T1d care, including from dietitians and social workers. When we've asked to speak with the dietitian, he or she just hands us a xeroxed sheet with nutrition information, and he or she usually has no particular knowledge about celiac and the GF diet. We have never had the opportunity to talk with Child Life at our current clinic (I'm not sure they even visit outpatients at our hospital). And when our daughter has had emotional issues surrounding life with T1d/celiac, we've never had an opportunity for her to meet with a social worker during the clinic visits -- instead, the psychologist will call the parents later for a phone consult (i.e., when we are at work). In sum, our endo and CDE are fantastically gifted at disease management, but we receive little to no support on the psycho-social aspects of diabetes during our clinic visits.

    We have also never been offered clinical trial participation outside of TrialNet. I've always assumed (with no way of confirming!) that you have to be a patient of one of the research rock stars to access clinical trials. It would be nice to have more transparency about trial opportunities.
     
  5. Manuel

    Manuel Approved members

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    Our experience is very similar to Snowflake's. The psychological part is not covered. My son have 2.5 years old, and I don't fully understand how much T1D is affecting him. How much he understand, at what age we should have a talk about T1, which are the most commons challenges (psychological and social) he will have to overcame.
     
  6. Megnyc

    Megnyc Approved members

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    I'm an adult with type 1. I'm also pregnant so I have had a lot more contact with the clinic than previously. I have mostly gone to endos who have small offices with 1 or 2 doctors but in the interest of convenience I switched to the academic practice in the hospital outpatient clinics where I am a medical student. Also, I have really only dealt with the endo practice for frequent thyroid med adjustments since diabetes wise I really just need someone to write prescriptions.

    Pros:
    They take my opinion into account. This was pre pregnancy but my TSH was high but not significantly so and they let me take a wait and see approach for a few months before starting thyroid meds (obviously during pregnancy this is a totally different story).

    They do everything via the patient portal or email. Emails are answered extremely quickly.

    They are great with getting prescriptions sent in though occasionally there are issues with insurance and the way the quantity is written. I find dealing with prescriptions and keeping them up to date to be the most annoying part of diabetes so that is great. They are fine increasing the quantities for things like infusion sets (change every 48 hours instead of every 72) so I have plenty of extra on hand.

    There are tons of clinical trials though it doesn't really apply to me. The endo always keeps me up to date on what specifically they are doing in that area.

    They were fine with me coming in once a year with blood work every 6 months (this was pre pregnancy) as long as my A1C was under 6.

    Cons:

    It is a teaching hospital. As a medical student that is great but as a patient it can be frustrating to see a med student, resident, and fellow all in one visit with waits in between. My case is a bit unique though so that may be why it seems like everyone gets paraded through my room like I'm a zoo animal. Also you see different doctors at every visit so don't really have "your endo."

    They insist on downloading your glucose meter at each visit. No meter, no appointment. I find that incredibly paternalistic but I deal with it for the convenience of the location. I only give them the meter I have in my purse though so I'm pretty sure my chart says I test 1-2x a day which is not true since I have multiple meters.

    They technically won't make changes off a dexcom report. I make all changes on my own so it doesn't really apply to me but I think it is a ridiculous policy. I test 4-5x a day but wear a dex 24/7 so I believe it is insane to even look at the meter.

    ETA: Also, it seems like all the psychosocial support and services are geared towards type 2s. There are tons of seminars, groups, monthly lunch talks etc. for type 2s but I have never seen a flyer for anything relevant to a type 1. Even the pump class they have coming up is specifically for type 2s considering pumping.
     
    Last edited: Nov 8, 2016
  7. Cheetah-cub

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    Congratulations, Meg!! Good luck with your pregnancy.

    To answer our OP's question.

    We are happy with our clinic. All the endos and diabetes educators we interacted with have been great. We found them all very knowable, and we get to book whichever doctor or nurse practitioner we would like to see. They listen to us, and pretty much always give us everything that we asked for. We trust our diabetes team a great deal.

    If I have non-urgent issues, I can email the diabetes team, they usually answer the email the same day or next day. They also provide urgent and non-urgent phone numbers to reach them.

    Our clinic is part of a large university, and they conduct a lot of clinic trials. We have been invited to join a few trials, but so far we have said no, only because most of their trials are with tubed pump. My daughter loves her omnipod, and will not give that up. If they have any trials coming up with omnipod, then we would be interested.

    The only thing is that their dietitian did not know much about the gluten free diet at all, but we do have separate G.I. resources as well in the same clinic.
     
  8. Megnyc

    Megnyc Approved members

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    Thank you!
     
  9. sszyszkiewicz

    sszyszkiewicz Approved members

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    The single biggest issue with our clinical experience is that they are simply not equipped to deal with the fact that we have a Dexcom. They are not geared towards the reality that managing T1D is different with a Dex vs. without.
     
  10. Beach bum

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    Congratulations Meg!
     
  11. Beach bum

    Beach bum Approved members

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    I want to amend my initial post.

    After going to the clinic yesterday, I wish that the there was more in teaching responsibility for teens. Meaning, transitioning them to more to independence. There should be a set timeline to work with. I had to make sure that things such as driving were covered, then balancing school work etc.
     
  12. mamattorney

    mamattorney Approved members

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    First off - Congratulations Meg! I wish you the happiest and healthiest of pregnancies. Very exciting!

    I wish our clinic was proactive in offering services beyond A1C and pump settings. I'm confident they have them and I suppose they refer their patients that overtly need the services to those services, but they haven't been offered to us since we left the hospital at diagnosis.

    In practicality, I have no idea why we even go every three months. My daughter's a1c is never a surprise; she wears a dexcom virtually 24/7. I mean it might be a couple of tenths off of the dexcom averages, but it's never a huge shock. We make pump changes on the fly as necessary. Every visit is quite routine and almost an inconvenience. Now, I could have worse issues . . . I could have a child who refuses to wear a dexcom, who won't take insulin, won't test, lies, etc. Our diabetes stress comes from her laissez-faire attitude about carrying low snacks and never keeping track of when her pump is running low resulting in more than one "emergency" situation that never needed to happen.

    But maybe she could use some mental health therapy, even if she isn't in crisis. If it were encouraged to everyone, not singling her out. Maybe some encouragement/offering of classes or "try this for a week" mandates on different dosing methods (sugar surfing, etc) would make her even healthier and happier.

    I don't get much out of our appointments.

    On the plus side, they are remarkably responsible and swift to approve any and all prescriptions, equipment, technologies, sign paperwork, etc that we ask for.
     
  13. rgcainmd

    rgcainmd Approved members

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    We have the same issues, and it drives me mad at times. I don't want my daughter to obsess about her T1D, but a little more diligence on her part would go a long way...
     
  14. rgcainmd

    rgcainmd Approved members

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    Congrats, megnyc!

    I did the baby during med school thing, and I won't lie: this made a difficult time even more challenging. But if anyone is up to such a challenge, it's you!

    I've never regretted it!
     
  15. Mimikins

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    Congrats, meg!

    The endo I see isn't affiliated with any university but is a part of a larger local health system. It's nice for me, because information can easily be communicated between all my doctors through their electronic health records (I don't need to fast for a cholesterol draw if my PCP can see on my EHR that I did a draw three months ago for the endo). My PCP has the attitude of letting my endo take care of my diabetes, and my endo completely trusts me in managing and adjusting my doses, so I have free reign of everything (I'll shoot off the occasional email if I'm really stumped, and someone typically gets back to me within 48 hours).

    I like that I am considered a valuable member of my diabetes team, though at this point my "team" is only my endo, the NP I see between yearly endo visits (because I need to see someone every 6 months for insurance to continue covering pump therapy), and my CDE (and I haven't had an appointment with her since I started pumping). At my appointments, it ends up being a very quick look over and interpretation of my A1C and other lab results (which I could do at home through the patient portal and my good old nursing textbooks), look at my pump data from the past two weeks, and adjust doses as needed (which is something I do already at home). It's good to have that second pair of eyes to spot trends that I might be overlooking though. Honestly, I only go to the endo for insurance to keep covering my pump (and if I'm seeing the NP to get info on professors I'm taking -she's an alum of my nursing school and had a few of my professors).

    My endo doesn't focus much on the psycho-social-spiritual domains of diabetes. It wasn't until I started having severe mood issues related to a medication was I offered a referral to see someone. I didn't see a dietician even after my diagnosis (I pretty much did religious carb counting through MyFitnessPal and adjusted my diet based on my BG). I also really wish the endo had a better way to share diabetes data. I don't think my clinic uses diasend, which means that I have to give them my login information for T:Connect (when T:Connect's data lags a bit. They only give the pump data up until 2400 the previous day, which isn't useful if I am contacting the endo for something that happened after midnight today).
     
  16. Megnyc

    Megnyc Approved members

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    Thanks for the congrats! Realistically, there really isn't going to be a great time in the next 10 years for us to have kids and we want a big family so starting now is as good a time as any. Now ask me how I feel in a few months when I am studying for step 1 (a huge important exam we take this spring/summer) with a newborn and we will see if my thoughts on this have changed! Thankfully we have a lot of support from our classmates (who refer to the baby as "our class baby"), friends, school deans and administrators, and family.

    ETA: Sorry Jeff for sort of derailing your thread. This is a super important topic. I have never really found endo appointments to be a worthwhile use of my time and have never found the appointments particularly pleasant. I would love to see some focus on the issues specifically facing older teens and young adults as they transition to attending endo appointments on their own and managing all the supplies and insurance issues.
     
    Last edited: Nov 11, 2016
  17. MomofSweetOne

    MomofSweetOne Approved members

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    We started off with a fabulous endo and CDE that we saw at each appointment for the first two years, Then the kids with T1D got assigned to NPs rather than endos. Our first NP was great but ended up leaving after we saw her twice. The next one was a total mis-match for my daughter (and myself). She didn't know D, nor did she seem interested in learning either. Appointments were for writing goals, etc. I remember leaving one appointment and telling an adult friend with T1D, "I feel like l watched my daughter get emotionally raped" to which our friend responded that is exactly what it can feel like at times. My daughter was becoming resentful and withdrawn at appointments, so I asked for a switch. I didn't like then feeling like we were being problematic when we hadn't requested any change to begin with. I wasn't going to loose my daughter's positive attitude and motivation because of a staffing change we weren't involved in selecting. We ended up changing hospitals, and my daughter has thanked me for teaching her that she does have the ability to select a different doctor when the match is a disaster.

    I disliked that the hospital system that played up the "team" concept so much at diagnosis then treated the relationships as merely business. My daughter CRIED when the second form letter notifying us we were being switched AGAIN in less than a year. There wasn't closure, transition, or anything. It was handled very poorly.
     
    Last edited: Nov 11, 2016

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