Multiple Sclerosis International Federation, (MSIF) London is reviewing the current principles, which determine the “Quality of Life” of persons who have MS. As part of the said consultative committee, a feedback as regards the same is being sought from MS persons around the World.
MSSI is looking to consolidate the feedback. Join our discussion here.
The Current Principles
1. Independence and Empowerment
People with MS are empowered as full participants in their communities and in decision –making about the management and treatment of the disease.
2. Medical Care
People with MS have access to medical care, treatments and therapies appropriate to their needs.
3. Continuing (Long-term or Social ) Care
People with MS have access to a wide range of age-appropriate care services that enable them to function as independently as possible.
4. Health Promotion and Disease Prevention
People with MS have the information and services they need to maintain positive health practices and healthy lifestyle.
5.Support for Family Members
Family members and caregivers receive information and support to mitigate the effects of MS.
6. Transportation
People with MS have access to their communities through accessible public transportation and assistive technology for personal automobiles.
7.Employment and Volunteer Activities
Support systems and services are available to enable people with MS to continue employment as long as they are productive and desire to work.
8. Disability Benefits and Cash Entitlements
Disability entitlements and services are available to those in need, provide an adequate standard living, and have flexibility to allow for the disease variability to allow for the disease variability that is characteristic of multiple sclerosis.
9. Education
MS does not inhibit the education of people with MS, their families or careers.
10. Housing and Accessibility of Buildings in the Community
Accessibility, both of public buildings and in the availability of accessible homes and apartments, is essential to independence for people with MS.
Background
The Principles (produced in 2005) outlined the gold standard of what people affected by MS need in order to have quality of life. By examining available evidence from across the world, the Principles identify the above ten key factors that could help enhance the lives of people affected by MS.
Ten years on, the principles are still being used by MSIF’s member organisations to inform strategic plans and advocacy campaigns, and to priorities the care and support services they provide. They are a highly valued and flexible international framework for nation action.
Ten years
The world has changed a lot since the Principles were first produced, as has the situation for people affected by MS. Now is the time to revisit and refresh the Principles to :
- Bring renewed global attention to the ways life can be improved for people affected by MS right now.
- Incorporate recent developments such as the Convention on the Rights of Persons with Disabilities new treatments for relapsing-remitting MS, use of social media, etc.
- Be more representative of gender, different religions, culture and contexts
- Reflect the evolution of the way of quality of life is understood and present new evidence on the topic.
Who are the Principles for?
The Principles will be used by:
-
National MS organisation
For advocacy initiatives on a national level, strategic planning and to plan the development of their service and support programs. - People affected by MS
To evaluate and advocate for the services and support they need.
