This petition is a response to the urgent need to address the unmet needs faced by over 1.2 million individuals living with MS across Europe.
Every five minutes, someone, somewhere in the world is diagnosed with MS.
As an unpredictable chronic neurodegenerative condition, MS involves the immune system erroneously attacking healthy nerves. The complex nature of MS makes it an ideal case study for strengths and failures in health and social care.
Our vision for care of MS, inspired by the World Health Organisation’s framework for integrated care, is for “all people [to] have equal access to quality health services that are co-produced in a way that meets their life course needs, are coordinated across the continuum of care, and are comprehensive, safe, effective, timely, efficient and acceptable; and all carers [to be] motivated, skilled and operate in a supportive environment”.
Countries that fail to provide quality care are failing their communities.
There are currently huge and unacceptable inequalities in the care of people affected by Multiple Sclerosis and other neurological conditions across Europe, in access to timely, appropriate healthcare, healthcare professionals and social support for people with MS and their carers. Inadequate standards of care cannot and will not be accepted.
According to 2020 MS Barometer:
- 43% of people with MS in Europe do not receive diseases-modifying drugs.
- 52% of people with MS in Europe do not have access to physical rehabilitation services.
- only 16 countries in Europe provide social support specific to carers of children and adolescents with MS.
- only 48% of people with MS in Europe are in employment.
- 65% of people with MS in Europe are not recorded on the national MS diseases registries.
The 2020 MS Barometer shows that the entire MS community has work to do. Policymakers and decision-makers from the local to the European level must immediately secure sufficient and consistent funding for health and social care systems to provide people with MS with the clinical and practical support that meets their needs. We must facilitate access to employment, and secure disability benefits and social support for all people with MS. These services need to be available from the life-changing moment of diagnosis and be responsive to changing needs. The health, social, education and employment sectors must organise around people with MS.
European Multiple Sclerosis Platform