Social exclusion, or marginalization, is the failure of society to provide certain individuals/groups with the rights & benefits typically available to its members.

It focuses attention on factors that prevent individuals or groups from having opportunities open to the majority of the population. The EMSP wants to develop social indicators that measure how MS has an impact on a person's social inclusion or exclusion. Your responses will be used to identify social issues and how they are managed in the current social systems. The questions will take you 10-15 minutes. We appreciate your time.
 
General information

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* 1. Country:

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* 2. What type of organisation do you work in?:

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* 3. Professional activity:

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* 4. MS Community member

MS Visibility

Multiple sclerosis (MS) is a complex neurodegenerative disease affecting over 1.2 million persons across Europe. It is most frequently diagnosed in people aged 20-40 years. Common symptoms often include pain, fatigue, reduced mobility and cognitive disfunction resulting with activity limitation[1]. Combined with societal barriers, these can lead to social exclusion.

Integrated care involving optimal medical treatment and social supports have significant effect on combating disease progression and improving the quality of life of people with MS.

[1] Montalban X, Gold R, Thompson AJ, et al. 2018. ECTRIMS/EAN Guideline on the pharmacological treatment of people with multiple sclerosis. Multiple Sclerosis Journal 24(2): 96-12

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* 5. Are you familiar with the above definition of MS and its symptoms?

Governance

Government (local/regional or national) policies in the following areas take into account people with MS /or neurodegenerative diseases (independent of disability status):

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* 6. Economic Development

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* 7. Employment, including professional reintegration, flexibility and reconversion(independent of their disability status):

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* 8. Education and Training, including development of skills in relevant occupations(independent of disability status):

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* 9. Equality (legislation that is anti-discriminatory, universal access to services, independent of their disability status):

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* 10. Housing (access to suitable/affordable accommodation, age-appropriate accommodation, social care provision)

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* 11. Information & Communications Technology (accessible and appropriate for people with MS)

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* 12. Transport (accessible and appropriate for people with MS)

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* 13. Healthy well-being (access to sports, community groups, social groups, interactions for persons with MS)

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* 14. Mental health

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* 15. Socio-economic research (general involvement of people with MS – are their voices and testimonies taken into account)

There is a co-ordinating unit at the following levels with dedicated responsibility for social policies that include MS issues:

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* 16. Central

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* 17. Regional

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* 18. Local

Administrative Leadership

Policies against social exclusion of persons with MS or neurodegenerative diseases (independent of their disability status) are co-ordinated across government levels:

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* 19. Central

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* 20. Regional

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* 21. Local

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* 22. Any other comments

Legislation

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* 23. Legislation is used as a tool to reduce social exclusion of persons with MS or neurodegenerative diseases (independent of their disability status)

Resources

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* 24. Government resources are re-directed towards policies that support social inclusion of persons with MS or neurodegenerative diseases (different from disability)

Capacity and skills

MS awareness training (for the staff responsible for social care services), including information, guidance, and advice on the disease and support resources is delivered at the following levels:

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* 25. National

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* 26. Regional

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* 27. Local

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* 28. Any other comments

Data, research, and evaluation

Collection of information including PatientRelated Outcomes (PROs) and social diagnosis of persons with MS or neurodegenerative diseases (independent of their disability status) have been developed in the following areas:

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* 29. Policy  (all kind of policies have been informed by the data about MS)

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* 30. Healthcare (healthcare interventions have been informed by the data about people with MS)

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* 31. Socio-economic (fiscal/financial decisions have been informed by the data about people with MS)

Social inclusion targets concerning people with MS and neurodegenerative diseases (independent of their disability status) have been developed across government functions:

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* 32. National

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* 33. Regional

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* 34. Local

Evaluations of policies concerning people with MS or neurodegenerative diseases (different from disability) are undertaken at the following levels:

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* 35. National

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* 36. Regional

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* 37. Local

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* 38. Any other comments

Engagement and participation

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* 39. Persons with MS & patient organisations are consulted on social policies development (such as training/retraining, employment assistance, social welfare supports, etc.):

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* 40. The experiences of people with MS, arising from these consultations, are integrated into social policy making and relevant healthcare and social supports:

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* 41. Any other comments

Political leadership and sponsorship

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* 42. Who do you think should lead on improving social care services for persons with MS/or neurodegenerative diseases (independent of their disability status).
Tick all that apply:

MS Integrated care and reinforced social services

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* 43. What do you think would be the key for the provision of integrated care (e.g. linking medical treatment with social supports) for persons with MS /or neurodegenerative diseases (independent of their disability status)?

Tick all that apply:

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* 44. How do you think persons with MS /or neurodegenerative diseases (independent of their disability status) should be supported? Tick all that apply:

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* 45. What do you think are the key conditions for the introduction of successful integrated care services for persons with MS /or neurodegenerative diseases (independent of their disability status)?
Tick all that apply:

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* 46. Access to refunded medical treatment & rehabilitation for persons with MS /or neurodegenerative diseases (independent of their disability status).
Tick all that apply:

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* 47. Do you think that universal access to digital tools, including telecare, could improve conditions of persons with MS /or neurodegenerative diseases (independent of their disability status). 
Tick all that apply:

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* 48. How do you think social supports (such as training/retraining, employment assistance, social welfare supports etc.) should be funded?  (for persons with MS or neurodegenerative diseases independent of their disability status and including their carers)

Tick all that apply:

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* 49. Who do you think should co-ordinate social care services for persons with MS or neurodegenerative diseases (independent of their disability status)? Tick all that apply:

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* 50. What role should NGOs play in the support system for persons with MS or neurodegenerative diseases (independent of their disability status)? 
Tick all that apply:

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* 51. Any other comments

Thank you for your participation in the survey.



In addition to the data from MS Barometer 2020 (www.msbarometer.org), the social indicators will give policy decision-makers a complementary tool to assess social inclusion of people with MS and to monitor the progression of the implementation of the MS and neurological disease agenda in different countries in Europe.

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* 52. Please tick here if you would like to be contacted with more information about EMSP activities

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