Factors that lead to the establishment of PPSO-E
Before the establishment Of PPSO-E in Ethiopia nothing was known about Parkinson disease. Although considerable numbers of Parkinson patients were believed to exist throughout Ethiopia, nothing was known about Parkinson disease. Unlike other diseases, nothing was broadcasted on media, on TV or radio, nothing was written on printing media. No name was given to the disease in Amharic the official language or in other Ethiopian language.
2) Wrong conception (causes attached to Parkinson disease.)
Even though no information was available on Parkinson, the traditional Ethiopian society attached several causes to Parkinson disease. Most people thought Parkinson is caused by bad sprits response for what the patient did. Its solution would be to go to traditional hillers or to holly water. This thinking discouraged patients to go to health institutions, as bad sprit cannot be cured by drugs. After going to traditional hillers or holly water, if the patient failed to be cured, then he or she will remain hidden at home until death.
3) Inadequate Diagnosis for those Parkinson patients who manage to go to health institutions
Even when some patients from big cities or some educated patients visit the heath institutions, the treatment was discouraging. This is because Parkinson disease has to be diagnosed by neurologist. Since the numbers of Neurologists working in Ethiopia are very few and they are in teaching hospital, to be treated by the specialist patients’ need a referral form. Hence patients has to go through hardships before getting to the right specialist. As a result of this challenges the patients face lack of proper diagnosis. Even for specialist to diagnosis Parkinson it takes time and frequent visits. In the middle of this they lose hope and may stop following their case. When they lack the right treatment on time they may start to believe what the society told them.
- In General Parkinson patients are affected by multifaceted problems;
- Health related problems
- Lack of information and proper diagnosis
- Economical (reduced income) and Social (stigmatization & reduced social participation) thus before the establishment of PPSO-E Parkinson patients were affected by multifaceted problems;
Realizing the difficulty of the life of PD Patients and their care giver the founder together with two of her friends and two of her patients established PPSO-E at 2011.
Organizational Governance Structure
The overall management of PPSO-E is organized at three levels. A general assembly that includes the founding members who constitute the highest governing body that meets annually.
The second level of governance, which is accountable to the general assembly, is a Board of Directors, comprised of five members serves four years. The Board meets on quarterly basis and is responsible for executing and implementing the decisions, policy guidelines and other assignments entrusted by the general assembly. The day-to-day activities are managed by the secretariat, which is headed by an Executive Director who assigned Head of Admin & Finance and Head of programs and others according to roles and responsibilities approved by the board committee as accountable to the Board.