From the moment they are diagnosed and throughout their disease progression, people with Motor Neurone Disease (MND) will require palliative care equipment and help from family to manage their symptoms at home—so that they can achieve the best possible quality of life.
How does MND Malaysia help people with Motor Neurone Disease (MND)?
MND Malaysia serves as a platform for MND—a platform that goes beyond bringing awareness to the community of people with MND and informing the public about it. The platform helps by:
- Connecting people with MND to the University Malaya Medical Centre (UMMC) MND Clinic. The clinic does not accept walk-ins. Contact us at +6017 883 8839 (WhatsApp) OR firstname.lastname@example.org to get assistance. Learn more about the 3 areas of consultation provided at the clinic.
- Leasing of palliative care equipment for people with MND that have been discharged and registered with us. Equipment required depends on the availability and the disease progression of a person with MND. Learn more about leasing of equipment.
- Scheduling home visits to the residence of a person with MND.
- Educating the families of people with MND about caregiving in order to support a person with MND at home.
- Organising events & activities for people with MND (and their families) to socialise and stay connected with society.
- Connecting MND-related medical professionals (Doctors, Nurses, and Therapists) in hospitals nationwide to effectively diagnose and provide the required palliative care to manage the disease for people with MND.
What consultation does the UMMC MND Clinic provide?
Consultation at the MND Clinic in UMMC covers 3 areas to manage the symptoms of MND:
- Neurology. To diagnose and monitor the disease progression.
- Palliative Care.
- To introduce multidisciplinary care that helps people with MND manage the symptoms as the disease progresses, such as Speech & Language Therapy (SLT), Psychology, Nutritionist & Dietitian, Percutaneous Endoscopic Gastrostomy (PEG).
- To educate and to familiarise carers of people with MND so that they can manage the symptoms and support a person with MND at home.
- Neurorehabilitation. To assist people with MND on muscle management through an available Occupational Therapist (OT) or Physiotherapist.
Does MND Malaysia provide financial aid?
No, MND Malaysia does not provide financial aid. People with MND and their family members should consult with the following to find out what entitlements/benefits are claimable under their terms & conditions:
- Insurance Provider. MND is covered under “Critical Illness” by your insurance provider. Please consult with your insurance provider to learn more about your insurance coverage.
- Social Security Organisation (SOCSO) / Pertubuhan Keselamatan Sosial (PERKESO). If you are employed and registered with SOCSO/PERKESO, please consult with them for more information.
- Employees’ Provident Fund (EPF) / Kumpulan Wang Simpanan Pekerja (KWSP). EPF/KWSP covers MND under “Nervous System” for medical problems withdrawal. You may make a withdrawal from your Account 2 to help cover the medical expenses for approved illnesses or healthcare equipment. Please consult with them for more information.
- The Department of Social Welfare / Jabatan Kebajikan Masyarakat (JKM). JKM provides welfare services under the Ministry of Women, Family and Community Development (Kementerian Pembangunan Wanita, Keluarga, dan Masyarakat). Please consult with them for more information.
What equipment does MND Malaysia provide?
Depending on the disease progression of each person with MND, the equipment will help them live the best possible quality of life with MND. The leasing of equipment is dependant on the availability and must be returned to us when it is no longer needed by the person with MND so that the next person in the waiting list can use the equipment.
MND Malaysia only leases equipment (free-of-charge) to people with MND that are discharged and registered with us.
The equipment lease is only available for people with MND under ALL the following conditions:
- They have a household income that falls within the “Bottom 40% (B40)” income group in Malaysia.
- When the equipment they have requested from the Social Welfare Department (Jabatan Kebajikan Masyarakat or JKM) is not available OR is pending approval.
The types of equipment that are on lease:
- Medical Respiratory Ventilators (Trilogy-100, Bipap AVAPS Dreamstation, Cough Assist)
- Communication Eye Trackers (Tobii)
- Communication Cards. Printable cards with alphanumerics and icons for communication between a person with MND and other people. View PDF
- Frequently Asked Questions (FAQs). A guidebook of FAQs for people with MND and/or their carers to help throughout the MND progression. (Courtesy of Yayasan ALS Indonesia.) View BM PDF | View EN PDF (Coming Soon)