Special units will be established in inpatient hospitals for the diagnosis and treatment of neuromuscular diseases, including SMA, DMD and ALS, which affect the muscles and nerves, by the Ministry of Health.
The “Regulation on Neuromuscular Diseases Unit”, prepared by the Ministry of Health, entered into force after being published in the Official Gazette.
Accordingly, neuromuscular diseases units will be opened in inpatient hospitals belonging to the Ministry and universities.
The units will be established within the health facility with the permission of the Ministry. The Ministry will make plans for the opening of the units, taking into account the demographic structure of the province and the regional distribution of neuromuscular patients.
Diagnosis, treatment, rehabilitation, psychosocial support and training services will be provided in the units where those with neuromuscular diseases will be accepted and followed up.
In the health facility where the unit is located, it will be mandatory to have a second or third level intensive care unit, EEG and EMG laboratory, and laboratory service where genetic diagnostic tests will be required. Health facilities that do not carry out genetic diagnostic tests will be able to obtain this service primarily from the nearest public institutions through service procurement.
The services that cannot be provided in the health facility where the unit is located, but are needed in diagnosis and treatment, will be reported to the hospital chief physician by the unit responsible. Permission will be obtained from the Ministry as to whether these services can be procured through service procurement.
PERSONNEL TO BE ASSIGNED TO THE UNIT
At least one pediatric neurologist or neurology specialist, a physical medicine and rehabilitation specialist, a nurse, a psychologist, a social worker/social worker, a physiotherapist, and a secretary are among the personnel in the health facility on the days the unit is in service. will be assigned. These numbers can be increased by taking into account the facilities of the institution and the number of patients.
If needed in the unit, pediatrician, child and adolescent mental health and diseases specialist, mental health and diseases specialist, orthopedics and traumatology specialist, neurosurgery specialist, pediatric chest diseases / chest diseases specialist, pediatric infectious diseases / infection diseases specialist, anesthesia and reanimation specialist, pediatric surgery specialist, cardiologist, pediatric cardiologist, medical pathology specialist, medical geneticist, general practitioner, occupational therapist, language and speech therapist and other personnel can be assigned by the chief physician.
A general practitioner will be able to act as a coordinator physician in the unit, if needed.
One nurse will be assigned for every 200 patients diagnosed with neuromuscular disease and recorded to be followed up in the unit.
The nurse will be permanently assigned to the unit and will not be able to work elsewhere in the health facility. If the unit serves 3 days or more per week, the secretary will be assigned to the unit on a permanent basis.
A SPECIAL COMMISSION WILL BE ESTABLISHED FOR NEUROMUSCULAR DISEASES
In addition, the “Neuromuscular Diseases Scientific Advisory Commission” will be established by the Ministry.
This commission is chaired by the General Director of Health Services or at least a department head-level representative to be appointed, one representative each from the General Directorate of Public Health and the General Directorate of Public Hospitals at the head of department, 6 specialist physicians with experience and training in neuromuscular diseases, It will consist of a total of 11 people, including a physiotherapist and a social worker/social worker.
The Commission will present its opinion to the General Directorate of Health Services in order to determine the measures to be taken, services to be provided and national strategies in the field of neuromuscular diseases and units throughout the country. If requested by the General Directorate, the commission that will participate in the inspections of the units will give an opinion on the functioning of neuromuscular disease units when deemed necessary.
Centers that were approved for activity before the effective date of the regulation will be brought into compliance with the provisions of the regulation until 31 December 2021.