Who is Invited to a Diabetes Follow-up Visit?

Hi Katherine: I appreciate your thoughtful comments. It always amazes me that medical practice may be so diverse in different areas of the globe. As you know, there is no standard of practice in terms of seeing patients separately from the parents in the US. In your situation, it appears that the Diabetes team caring for your son is not providing treatment unique to him but rather generalized to all type 1 patients. This is not family-centered care. They also seem to be cutting corners a bit and accepting less than optimum diabetes self-care skills.  I am also assuming based on your comments that you do not get a chance to discuss your concerns with the diabetes team. In my opinion, that is not acceptable. I can understand seeing the teen separately from the parents; but there should be some form of debrief wherein there is a dialogue between the treating team, parent(s) and teen. It seems, therefore, that your current providers are not meeting your son's needs. Are there any other multidisciplinary diabetes teams to whom you could bring your son? What about one of the academic centers throughout UK? I know Kings College in London is very good as is Dr. Andrew Hattersley's program (not sure where in UK). I think it must be worse as a trained physician to observe the short-comings of your diabetes care providers: very frustrating, indeed. If you wish, I could check out my American Diabetes Association reference that may list UK diabetes teams. Let me know how I may assist you, if at all possible.

Mrs. K: Thanks so much for your kind words (and feedback after the visit).

Directing positive thoughts to G!

DrC

Hi Fran,

Thanks for your reply. The situation is disgraceful but London would be too far away to travel for me.  It does seem to be a matter of poor leadership at consultant level. On various forums I have corresponded with other parents and Bournemouth/ Brighton seemed to be providing particularly good service to children, adolescents and their parents. Most others are having the same problem as I am. It is great to hear that it isn't the same for everyone. Keep up the good work.

The main issues that I have are what can I reasonably expect with the hormonal upheavals of adolescence over time. I am seeking normal blood sugars as far as possible but the unpredictable on and off vigorous dawn phenomenon is the big issue that is limiting our success.

Katharine.

Katherine another option is to find a CDE who does remote advisement.  Someone to check into is here in the states, Gary Scheiner.  Gary works has worked with patients outside of this country b/c diabetes care is universally the same!

Gary wrote "Think Like a Pancreas".  It's a book I suggest often to teens leaving for college.  Just a great reference!  I've used Gary's office for CDE care for 5 years and they have been the most reliable source, many times better than my endo, whom I love!  Gary and all his staff have diabetes, which makes them a group that think s the problems through with proficiency. Gary's website: Integrateddiabetes.com

Just food for thought, if care isn't easy to find then try something different!

katharine: adolescence, as you know, is associated with insulin resistance, the dawn phenomenon and emotional upheavals. You are right to expect increased variability of blood sugars. Use of basal/bolus therapy with the multiple injections of rapid acting insulin with lantus or levemir as basal insulin might help. The pump might even be better as you could adjust basal rates to match the timing of the dawn phenomenon.

Anne Bartlett's idea is great and there are also may be ways to participate in telephonic diabetes care.

Fran

Thank you both. I am familiar with Gary's book and it is a great idea for me to speak directly to an experienced educator who shares similar goals regarding normalisation of blood sugars. 

My son is not on a pump but is on a very advanced basal bolus regime which has more in common with pumping than regular basal / bolus routines.

His last hbaic was 6.7% compared to 5.3% 18 months ago.  In Scotland the mean hbaic for his age group is 9.5% for NHS treated young men and women so this gives you some idea of why there is complacency about blood sugar control from the hospital side.

Even if the answer from Gary's team is that I have to just sit out the hormonal upheaval effects for some time then at least I will know I have done everything that I reasonably can.

katharine: 6.7!! That is a fabulous A1c for any adolescent: a 3 month estimated glucose average of 145.59 mg/dl.  My realistic goal for an adolescent with raging hormones is 6.5-7.5%. Even under 8% during this period would be marginally acceptible in view of adherence issues and risky teenage behavior. So, I think you should consider yourself an expert! And btw, as you know, mulitple daily injections can perform as well as the pump: only exception is maybe, less hypogycemia on the pump due to multiple basal rates.

Fran

Thank you for commenting on your experiences. I am sorry that the care you and your family has received has not been consistently first rate.  I respect your comment that another person present during the doctor visit might be a good idea to record information for the patient. In order to allow my family and patient to actually listen to the discussion, I do the writing of important points on a separate paper and tear off a carbonized sheet to give to the family so that they could remember everything after the visit. I then sent a typed dictation summarizing the visit in detail.

There is no one way to communicate with patients and families. And, I am sure that some parents in my practice will want to remain with their teenager during the visit. That would be ok; but I think it is important to offer the choice.

Best of luck in future medical encounters,

DrC

Sorry: my reply did not go directly under yours; see below.

DrC

Shaedae: please see my response after further comments.

DrC