Atlas of MS Summary of Results
The MSIF recently published a presentsation of findings from their MS survey. I list that presentation here in full as it was presented
Epidemiology
MS is a global disease – no country that responded to our survey was free of MS
MS is a disease more common among women than men
Symptoms appear at around an average of 30 years of age
The survey revealed the geographical patterns associated with the disease
Under-recording is likely in many tropical/equatorial countries
There is a lack of reliable, valid and robust data from epidemiological/economic
impact studies/reports published in medical literature (especially in Africa and parts
of Asia where the prevalence is reported to be low)
MS Organisations
Many countries in the world have no patient-driven support for people with MS
Diagnosis
The availability and accessibility of MRI technology varies widely
Time from onset of symptoms to diagnosis varies widely – often drawn out over
many months or years
Inequalities in global wealth impact on the provision of diagnostic services
Information
There are inequalities in the provision of information – in many cases the gap
between information required and received is vast
Support and services
The needs of people with MS do not inform decision making, the implications of
which will ultimately improve their quality of life
Health care professionals are not receiving any (or enough) training to help them
identify and treat people with MS
There is a lack of public and professional awareness of MS and its impact
There is little understanding of the socioeconomic costs of MS to individuals,
families, carers and the community
Without adequate education, advice and support, people with MS are unaware of
how best to cope with their MS and how to remain in education or employment
In many countries mutual support groups are not available
In many countries no aids or adaptations are available from any source
Accessible public transportation is often not available or difficult to use and there is
little alternative transport support
There is poor provision of respite
There is a need for better understanding of how transport and drug delivery options
will overlap with care and treatment possibilities
Significant income inequalities exist around provision of treatment.
People with MS actively seek and use a wide range of untested and un-trialled
‘complementary’ or ‘alternative’ remedies, therapies and treatments
The findings confirm the key role played by MS organisations
Human Resources
In some countries the lack of MS neurologists hampers diagnosis and the provision
of treatments and therapy
There is a general lack of MS nurses
There is an inadequate use of interdisciplinary teams in community settings
MS is being managed in a medical, not social, model of care
Disability entitlements, legislation and insurance
There is a need to integrate health and employment teams to improve vocational
rehabilitation
People with MS are often dependent on disability entitlements and means-tested
cash assistance for their income.
The eligibility standards, payment levels and administration of disability entitlements
and cash assistance have a direct impact on the quality of life of people with MS
Major issues
The major issues for people living with MS are
lack of social support
lack of information/education of the public about MS
non accessibility/availability of disease modifying treatments
issues related to employment
health insurance/social security related issues
The major issues for health professionals involved in MS care are
lack of information/education of health professional about MS,
issues related to the time it takes to diagnose and the process/technology required
the non accessibility/availability of disease modifying treatments
lack of research in MS issues
lack of health services, including MS centres
The major changes needed to improve MS care are
inform/educate the public and health professional about MS,
make health services, including MS centres and rehabilitation facilities,
accessible/available
develop MS societies/support groups
improve and expand research into MS issues
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