Quality Access to Care for People with Multiple Sclerosis and Neurological Conditions

To the President of the European Parliament, Members of the European Parliament, Ministers of Health, Social Affairs, Labour and Education, the European Commission and the European Council.

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Petition

Together, we will build a better Europe for people with Multiple Sclerosis (MS) and other neurological conditions and people with disabilities, their carers, and their communities.

We call the EU and the Members States to

Support all countries to improve access to appropriate MS therapies and programmes, expand cross-border access to treatment, and improve the use of regional funds and other EU financial mechanisms.
Reduce inequalities in access to specialised, multi-disciplinary healthcare by supporting professional societies and others to develop accredited MS specialist courses for healthcare professionals, and encouraging uptake in all countries.
Improve the social, economic and employment opportunities for all people with MS and monitor that their rights are consistently and equally applied in all countries.
Expand employment and educational support to young people with disabilities and chronic conditions, through existing European study and employment programmes.
Adopt employment legislation to protect people with MS and their carers from workplace discrimination and unfair dismissal.
Support the use of a common data set for MS data collection including patient-reported outcomes across all countries, and encourage trustworthy and transparent real-world data collection practices.

We call all national decision-makers to

Includes a holistic MS care model in a national chronic or neurological disease policy and provide dedicated funding for implementation. Eliminate delays in national licensing and reimbursement of disease-modifying drugs and symptomatic treatments after European Medicines Agency approval.
Increase specialist training opportunities for MS among neurologists, nurses, rehabilitation specialists and other healthcare professionals. Integrate rehabilitation therapists and other specialists, such as neuropsychologists, pain specialists and social care specialists, into all MS multi-disciplinary teams as standard and secure reimbursement for these roles.
Provide long-term and consistent funding for social care to expand provision of quality services and secure financial protection.
Expand the social care workforce and integrate new models of care which better support people with MS and their carers.
Expand and standardise distance learning and flexible working options to enable people with MS and carers to take up and maintain education and employment.
Expand MS disease registries to cover all people with MS and mandate data collection encompassing clinical, occupational, and patient-reported data.

Why is this important?

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

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