WORKSHOP :


  TREATMENT
     AND
REHABILITATION
IN RARE DISEASES :

  TREATMENT
      =
REHABILITATION
TREATMENT = all the methods used to
cure a disease and its consequences


- preventive ( prophylactic) : genetic
  counseling, diet, REHABILITATION...
- symptomatic : diet, REHABILITATION...
- curative: enzymatic substitution
  treatment , genetic therapy…
REHABILITATION...


    WHEN ???

    HOW ???
REHABILITATION

   WHEN ???
“Rehabilitation is a complex area of
 activity: medical, educational, social and
 professional which aims entirely possible
restoration of the functional ability lost by
the patient following a disease or a trauma
    and also developing compensatory
     mechanisms, with a view to reach
   maximum individual performance and
      maximum economic and social
              independence.“


                     Academy of Medical Science
REHABILITATION
      IS

  ALWAYS
  NECESSARY
REHABILITATION HOW ?


  6 GOLDEN WORDS


    6 PRINCIPLES
GOLDEN WORDS

     Patient
   Assessment
    Targets
      Plan
     Team
  Case manager
1st PRINCIPLE

  Knowing the diagnosis and its
  consequences on physical and
      psychological status
-
  Nervous system
-
  Locomotory system ( bones, muscle, joint)
-
  Endocrine system
-
  Senzorial system
-
  Cardiovasculary system
-
  Respiratory system
-
  Digestive system
-
  Genital and urinary system
-
  Metabolism
2.

 CORRECT
ASSESSMENT
  OF EACH
  PATIENT
3.

 TRACKING
ACHIEVABLE
  TARGETS
MAJOR TARGET:
  to achieve the entire possible
            potential
( physical, psychological, social,
 vocational and educational)…

         … reported to :
   physiological or anatomical
            deficiency
     to ambiental limitation
   to desires and life projects.
FINAL TARGET:
   INDIVIDUAL
 INDEPENDENCE
       AND
    INCREASE
 THE PATIENT’S
QUALITY OF LIFE
4.
        DEVELOPING
             A
         COMPLEX
      INDIVIDUALIZED
           PLAN
- medical plan: periodical assessment of the
  affected organs and systems
- rehabilitation plan
THE PLAN
 INCLUDES ALL THE
METHODS TO ASSURE
    FUNCTIONAL
  RESTORATION OR
   IMPROVEMENT
5.

 INVOLVMENT IN
   TERAPY OF A
MULTIDISCIPLINARY
      TEAM
DOCTORS
                                PHISIO
         NURSE
                              THERAPYST




CARING                              SPEECH
PEOPLE                             THERAPYST


                   PATIENT


SOCIAL                            PSYCHOLOGIST
WORKER



                                ERGO-
         FAMILY               THERAPYST
                  THEACHERS
ONE IMPORTANT
   QUESTION :
   WHO IS THE
CASE MANAGER ???
6.

   MONITORING
  THE PATIENT’S
  PROGRESS AND
CONTINUED UPDATE
 OF THERAPY PLAN
GOLDEN WORDS

     Patient
   Assessment
    Targets
      Plan
     Team
  Case manager
Dr. I. Rotaru

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Dr. I. Rotaru

  • 1. WORKSHOP : TREATMENT AND REHABILITATION
  • 2. IN RARE DISEASES : TREATMENT = REHABILITATION
  • 3. TREATMENT = all the methods used to cure a disease and its consequences - preventive ( prophylactic) : genetic counseling, diet, REHABILITATION... - symptomatic : diet, REHABILITATION... - curative: enzymatic substitution treatment , genetic therapy…
  • 4. REHABILITATION... WHEN ??? HOW ???
  • 5. REHABILITATION WHEN ???
  • 6. “Rehabilitation is a complex area of activity: medical, educational, social and professional which aims entirely possible restoration of the functional ability lost by the patient following a disease or a trauma and also developing compensatory mechanisms, with a view to reach maximum individual performance and maximum economic and social independence.“ Academy of Medical Science
  • 7. REHABILITATION IS ALWAYS NECESSARY
  • 8. REHABILITATION HOW ? 6 GOLDEN WORDS 6 PRINCIPLES
  • 9. GOLDEN WORDS Patient Assessment Targets Plan Team Case manager
  • 10. 1st PRINCIPLE Knowing the diagnosis and its consequences on physical and psychological status - Nervous system - Locomotory system ( bones, muscle, joint) - Endocrine system - Senzorial system - Cardiovasculary system - Respiratory system - Digestive system - Genital and urinary system - Metabolism
  • 11. 2. CORRECT ASSESSMENT OF EACH PATIENT
  • 13. MAJOR TARGET: to achieve the entire possible potential ( physical, psychological, social, vocational and educational)… … reported to : physiological or anatomical deficiency to ambiental limitation to desires and life projects.
  • 14. FINAL TARGET: INDIVIDUAL INDEPENDENCE AND INCREASE THE PATIENT’S QUALITY OF LIFE
  • 15. 4. DEVELOPING A COMPLEX INDIVIDUALIZED PLAN - medical plan: periodical assessment of the affected organs and systems - rehabilitation plan
  • 16. THE PLAN INCLUDES ALL THE METHODS TO ASSURE FUNCTIONAL RESTORATION OR IMPROVEMENT
  • 17. 5. INVOLVMENT IN TERAPY OF A MULTIDISCIPLINARY TEAM
  • 18. DOCTORS PHISIO NURSE THERAPYST CARING SPEECH PEOPLE THERAPYST PATIENT SOCIAL PSYCHOLOGIST WORKER ERGO- FAMILY THERAPYST THEACHERS
  • 19. ONE IMPORTANT QUESTION : WHO IS THE CASE MANAGER ???
  • 20. 6. MONITORING THE PATIENT’S PROGRESS AND CONTINUED UPDATE OF THERAPY PLAN
  • 21. GOLDEN WORDS Patient Assessment Targets Plan Team Case manager