Diabetes is a group of metabolic diseases characterized by hyperglycemia (high blood glucose levels) resulting from a defect in insulin secretion and/or action. In other words, type 1 diabetes indicates a complete lack of insulin production by the beta cells in the pancreas, which is why the patient must take insulin from outside the body for the rest of their life.
A person with type 2 diabetes produces their own insulin, but in insufficient amounts. This type of diabetes is treated with tablets and insulin. Unlike type 2 diabetes, type 1 diabetes is not caused by a poor diet, lack of exercise, obesity or stress. Diabetes cannot be contracted from another person, despite having been recognized as an epidemic of the 21st century. In diabetes therapy, it is particularly important to keep the patient within what is known as normoglycemia, which helps minimize the chronic complications resulting from the disease.
A person with type 1 diabetes is a person with a disability, directly exposed to serious harm to their health, including the possibility of death. The lack of constant supervision over children with type 1 diabetes—who are particularly affected by this form of the disease—can lead to tragedy. For almost a decade, I have been interested in the work of disability assessment panels; I help minors appeal the absurd decisions of these panels and support parents during appeal proceedings in court.
The knowledge I have gained during battles throughout Poland does not allow me to remain silent. In general, disability assessment practice can be regarded as a kind of “malignant tumor” in the public administration system. Panel members are appointed from among all kinds of specialists or doctors without additional specialization; in only a few cases are people with type 1 diabetes assessed by diabetologists.
Because there are not enough doctors willing to sit on the panels, we encounter post-communist retired doctors whose knowledge of type 1 diabetes in children is not merely limited, but even nonexistent. Such an assessor suffers from “deskitis,” as evidenced by their long-term occupation of the position. What can we expect from a neonatologist, pulmonologist, nephrologist, cardiologist or ordinary pediatrician who is, for example, the director of the sanitary inspectorate? How can such state officials with medical training reliably and objectively assess the actual condition of, and adaptation to life with the disease by, the person being assessed, since one is not a patient before the panel?
A parent who manages their child’s diabetes therapy, seeking to meet the therapeutic expectations of the treating physician, must be constantly ready to react immediately if unpredictable, acute complications arise. The problem with assessments is complex and polarized. On one side are experts, researchers and theoreticians who believe that a child must be self-reliant in managing their therapy after the age of 12 or 13; on the other are incompetent assessors who make decisions according to their own discretion. The welfare of the child and the right to a relatively carefree childhood do not exist for this group of minors. These actions can be called medical and administrative discrimination against children on the grounds of their health condition and age.
Numerous judgments of district labor and social security courts clearly indicate the indisputable need for constant or long-term care or assistance from another person due to a significantly limited ability to live independently (point 7 of the recommendations in the assessment). The panels, through their erroneous administrative decisions, generate costly appeals while ignoring judgments that change their decisions.
As I have already mentioned, panels operating on a voluntary basis cost taxpayers hundreds of millions of zlotys and, regardless of the decisions they issue, repeat their mistakes with impunity. In addition, every chair of an assessment panel who does not have a medical specialty appropriate to the child’s or assessed person’s primary disease violates several articles of the Code of Medical Ethics. This clearly indicates a lack of honor and ethics connected with the profession. Without diminishing the assessors’ titles, it can be said that simply walking through a diabetology ward in a white coat does not automatically make anyone a diabetologist. Doctors serving on the panels behave as though they were comprehensively qualified, yet in the places where they provide treatment, they refuse to consult and treat children with type 1 diabetes.
Returning to the subject of type 1 diabetes in assessment proceedings, important questions arise—questions to which we have been unsuccessfully seeking answers for years.
- By what right can a state official with medical training incapacitate a parent by making decisions on the parent’s behalf regarding their child’s independence, based on medical documentation and a monologue lasting several minutes?
- Who gives incompetent doctors—lacking specialization and knowledge of the assessed person’s primary disease—the right to decide a child’s future, repeatedly and knowingly exposing the child to serious harm to their health?
- Who will assume responsibility for therapeutic destabilization resulting from the lack of immediate, constant assistance?
When will assessors face criminal and disciplinary liability for mistakes repeatedly reproduced, costly for taxpayers and stressful for people with disabilities? - Will the long-standing “deskitis” in disability assessment panels and cronyism between administrative employees and doctors ever end?
- Does a tragedy have to occur before the employees of these panels start thinking?
I will present several points based on legislation and court judgments.
Type 1 diabetes is a disease which, according to medical knowledge, offers no prospect of cure or improvement; therefore, disability assessments are issued until the age of 16, while the disability level is assigned permanently. Regardless of age, a person with type 1 diabetes cannot live independently during unpredictable acute complications of diabetes. In addition, if they lose consciousness during severe hypoglycemia, they cannot administer a life-saving GlucaGen injection themselves. An insulin pump and a continuous glucose monitoring system did not and do not compensate for the disability that type 1 diabetes indisputably is. As their names indicate, these medical aids merely assist with the precise delivery of insulin from outside the body and the measurement of blood glucose levels. These devices can fail, and without a parent’s vigilance and immediate response to errors, they can lead to tragedy.
The Clinical Guidelines of the Polish Diabetes Association are not a legal act and cannot serve as a determinant in administrative decisions. “The concept of care should also be understood to include constant supervision over a person requiring care, constant readiness and the ability to provide immediate assistance when such a need arises at a given moment.” This follows from the judgment of the Voivodeship Administrative Court in Rzeszów of 7 March 2023 (II SA/Rz 1238/22), confirmed by the judgment of the Supreme Administrative Court of 27 May 2024 (case no. I OSK 1059/23).
I quietly hope that assessors—not only in Bolesławiec, but throughout Poland—will remember Article 10 of the Code of Medical Ethics, understand what Article 160 of the Criminal Code means, and begin issuing decisions in accordance with the needs of minor clients with type 1 diabetes, as well as adults affected by this disease.
The way children are treated today by educated adults will bear fruit in the future. Unfortunately, respect must be earned. By destroying the young population and robbing it of a safe childhood burdened by an incurable disease, we should not expect a blissful old age.
Ladies and Gentlemen, we speak about the lack of diabetologists in Poland, yet we fail to see all those tireless parent-diabetologists who are ready to fight this unpredictable disease 365 days a year, 24 hours a day. Without holidays or breaks, they ensure that their children can enjoy childhood and minimize acute complications, which are the seeds of chronic complications. It is sad that the parents’ dedication—and consequently the good therapeutic results—is incense with which some researchers surround themselves while boasting about the successes of those whom the system spares no hardship and places obstacles in the way of functioning every day with their child’s disability, which is a disease affecting the entire family.
Witold Fydrych
President of the “Słodka Jedynka” Association
Diabetes Educator
Clinical Dietitian
Knight of the Order of the Smile