Research on Home Care of Patients with ALS in East Asia Kyoto Japan, February 2009 Care Service for Patients with ALS in Mongolia Davaatseren Sergelen Secretary Mongolian ALS Association Ulaanbaatar, Mongolia

Ulaanbaatar city

Mongolian ALS Association  Information Centre for ALS patients  Care consulting with ALS patients  Advice against unknown treatment for ALS patients

Sector of medical service – Under transition  The 3 hospitals serve patients in Ulaanbaatar only.  The medical sector is under transformation and is funded with insufficient support by the government.  Improving the policy of medical service

3 big hospitals  The first universal hospital  The second universal hospital  The third universal hospital

State pension and support for ALS patients  Pension for disabled people is USD per month.  Average monthly salary is USD  Support given by relatives of PALS.  PS: PALS: people with ALS

Project-funded organizations  Support given from certain projects for disabled people.

Low level of health education  Poor health protection for the people in Mongolia  Lack of health diagnosing service  Most doctors do not have enough knowledge on ALS

Current situation of medical service in Mongolia  There are few medical necessary equipments at rural hospitals.  The rural hospitals do not have medical doctors.  The rural people live far from the central hospitals.

Advantage and disadvantage of home care.  Members of a family live together because of Mongolian tradition and customs.  Members of a family help each other in their daily lives.  Monthly family income is low for all members.

Improving the home care  Need to provide care equipments to homes of ALS patients.  Need to provide medicine to keep living for ALS patients (especially, for low income ones)  Need to provide more care information and advice to cope with daily troubles at homes of PALS.

Current situation of ALS patients in Mongolia  There are 8 patients registered in Mongolia.  There are no united diagnosis information center in Mongolia.

Thank you  Domo Arigato  Баярлалаа