Before or usual

Problem

Our practice

Dates

Family should apply the hospital's system by phone or internet,sometimes they cannot succeed before 3-4 months,in case of problem they should change the date. Those in follow-up may set the date during visits but again an effort is necessary when they should change

Diabetes is a lifelong disease and regular dates are hard to follow especially for families working in inconvenient status or children visiting schools with busy examinations etc. Lost from follow-up is frequent.

Every Thursday the diabetes clinic is open to every diabetic child. The senior pediatric endocrinologist (me), a fellow, a nurse, a social worker and two residents are available through the day. This don't give rise to any crowd or overload of work. Number of attendants is fluctuating to some extent but the team is ready for this.

Visits

Fellow makes the physical examination and laboratory assessment, interview about insulin dose,blood sugars etc. is made by diabetes nurse, in case of any complicated problem senior pediatric endocrinologist makes a consultation

Diabetes in a child is a complicated subject necessitating continuous accretion of experience and wisdom. Regular outpatient clinic set-up is not sufficient to solve underlying problems

After a quick structured physical and laboratory assessment in the outpatient clinic everyone (diabetes team,diabetics and families and guests like adult diabetics or enthusiastic professionals) is attending the interactive conversation,everyone asks about the most prominent problems in an environment resembling a family. In the afternoon everyone has the opportunity to talk to the professor alone or again in groups,download of glucometer and evaluation is made.

Communication, telemedicine

Diabetes nurse and sometime pediatric endocrinologist is available by phone and by internet in developed centers (not all)

People from team are not everytime in connection,families and children are seldom using e-mail,phone calls are expansive.

Me and every team member is available on facebook for personal chat or through the group page as an open forum. Every question is answered in maximum 3-4 hours.In addition if a diabetic person calls by phone, she or he is called back immediately so that they don’t have to pay the phone call.

Diabetes days, social activities

Many diabetes centers make activities around the center like meetings, dinners,sometimes walks

Enthusiastic families attend these activities but most part of diabetics resident far from center are not aware of or cannot attend them

We organize visits to far destinations with young people and bring them into connection with peers in far villages. We send greeting cards, letters to make them happy to be a member of "diabetes family"

Reaching the official  papers needed for reimbursement

The diabetic subject should attend the outpatient clinic

Wasting time,interruption of management

We assist the patient in every way, the slogan is "diabetics should never visit the hospital except for regular control visits"

Diabetes summerschool

In our country nearly 20 thousand Type 1 diabetics under 18 are living and diabetes camps capacity is less than 500 in total yearly

There are many frustrated children every year who cannot attend the camps

We solved the problem for our 300 background population in two ways : 1)We established the first diabetes summer-school which can comprise every willing child and family in a 5 day program, daily 08 00-17 00 with activities resembling diabetes camp and we help them for daily transfer from home 2)We established a real camp with pension with a lower budget than usual in a hotel not distant from hospital thus many of staff attending during the day.

Peer relations

Not available extensively, sometimes in camps and in a few centers occasionally during weekly outpatient clinics

Feeling of isolation especially in schools or in residential area

We connect diabetic families based on residential area or common characteristics like age of the diabetic child, sporting, parental business,pump using,concomitant disease etc. Not only children, mothers and fathers as well are organizing dinners,meetings and come together

Nutrition and daily behavior planning

In general routine newly diagnosed patient meets the dietician,a caloric need is calculated and a list for daily eating plan is given.Choices for exchange andoccasionally alternative meal times according to the patient may be given.  

During conversations the major fear which diabetes brings to the life of diabetic child and family is food and behavior restriction. This became a subconscious reflex augmented by the public as well.When the first approach of the diabetes team is didactic and imperative even those professionals enthusiastic for flexible recommendations cannot change the fix ideas and the child thinks :"When I cannot meet eating and time schedule recommendation,I cannot manage diabetes" and so he or she ignores even sugar checking and insulin injections.

We never give schedules, rather we ask about family attitudes and tailor the insulin regimen according to this. I am aware that this philosophy is not our original idea,but in questionnaires and conversation with professionals and patients we see that in real life no one practices individual tailoring.  I believe  we do!

Educational material

Books with detailed and idealized information and suggestion

Fear of failure and inferiority,educational material not revisited after diagnosis

Simple keycards to carry in the glucometer bag with user friendly  manner.

Social support

Generally speaking diabetes clinics deal with attending patients,rarely they call back in case of missing visits,especially when the patient is using pump,etc.

We found many patients never visited the pediatric endocrinology center 4-5 years after diagnosis,some of them even not the family physician

After discovering the main reasons for this as lack of money,lack of communication skills and lack of hope for overcome the difficulties of management we established an association and support those families for travel,nutrition,education expenses

First Diabetes Congress for the whole team

In our country and globally in general diabetes education is made in groups,diabetes schools,conferences are held etc.We have a yearly Pediatric Diabetes Team Course in our country.

These are helpful but even in interactive programs the patient is the subject,not possessing the initiative. Diabetes Team Course lacks the most important partner,i.e. the patient

In May 2014 we organized the first congress open to all diabetes team members, in a classical medical congress set-up, 3 days duration,abstract book,congress bag,national level participation and half of the 20 speakers were Type 1 diabetic children in origin, recently physicians,nurses,academic people,sportsmen etc.

First Diabetes and Sports Workshop

Even in sports medicine lack of knowledge exists about elite athletes with type 1 diabetes

Sports people with type 1 diabetes develop their own experience sometimes with the expense of bad situations

We organized in 08.07.2015 the first workshop with the active participation of three academicians, three elite sportspeople with diabetes and one dietician worked with diabetic sportspeople which was open to public as audience