Rethinking MS

Multiple sclerosis is a neurological disorder that places unique challenges on health and social care systems, which must work together to ensure the needs and goals of every person with MS are met.

Rethinking MS

Multiple sclerosis is a neurological disorder that places unique challenges on health and social care systems, which must work together to ensure the needs and goals of every person with MS are met.

Context

Multiple sclerosis (MS) is a complex and progressive disease of the central nervous system, where the immune system destroys brain, optic nerve and spinal cord tissue. As a result, people with MS develop irreversible motor-disability and cognitive impairment over time.

MS affects almost every aspect of life, from regular daily tasks to big decisions around employment and family planning. The personal and economic impacts of MS grow significantly as the condition progresses and disability worsens.

MS can be a challenging condition to manage. Its symptoms are unpredictable and often invisible, and every person with MS experiences the disease differently. Management strategies include disease-modifying therapies, symptomatic treatment and lifestyle interventions – all of which must be tailored to the individual with MS in order to be effective.

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Up to 58% of people with MS are not in employment

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42% of working respondents to an MS International Federation survey said support from employers or colleagues helped them to stay in employment

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In a Europe-wide survey, 46% of people with MS said they received informal care from family members

What we achieved

The European Brain Council (EBC) and The Health Policy Partnership (HPP) have been working together to create RETHINKING MS, a new project calling for change in how MS care and support is organised. EBC and HPP collaborated with experts from across Europe to build an interdisciplinary consensus around practical and sustainable policy responses to MS at the European level. This formed the basis of the core report, RETHINKING MS in Europe: prioritising integrated services for people with multiple sclerosis. Building on the findings from the 2017 Value of Treatment report, this pan-European policy narrative identifies key challenges in MS care and makes recommendations for how they can be addressed.

As different countries face specific challenges, it is important to consider the national context when advocating for policy change. For this reason, RETHINKING MS also takes an in-depth look at Denmark, Italy, Romania and Spain. The dedicated reports on each country provide a more specific analysis of MS policy, care and support available for people with MS in each country.

RETHINKING MS aims to create greater visibility for the unmet needs experienced by people with MS, with a particular focus on three key areas: timely diagnosis and personalised treatment; interdisciplinary and coordinated care; and adaptable support in daily life, including rehabilitation and social protection.

At a meeting hosted by the MEP Interest Group on Brain, Mind and Pain at the European Parliament on 6 November 2019, EBC and HPP launched the first tranche of RETHINKING MS reports: the European policy narrative and country profiles for Denmark, Italy and Spain. The next phase of work will include the country profile for Romania, along with a policy assessment tool to help national-level stakeholders looking to implement policies that will improve the lives of people with MS in their countries.

Key partners and stakeholders

Expert Advisory Group:

  • Professor Mario Alberto Battaglia, Italian Multiple Sclerosis Association and Italian Foundation for Multiple Sclerosis
  • Professor Filippo Martinelli Boneschi, University of Milan and Neurology Unit Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico di Milano, Italy
  • Pedro Carrascal, European Multiple Sclerosis Platform and Multiple Sclerosis Spain
  • Iza Czarnecka, NeuroPositive Foundation, Poland
  • Professor Jenny Freeman, University of Plymouth, UK; representative of Rehabilitation in Multiple Sclerosis (RIMS)
  • Professor Kerstin Hellwig, St Josef Hospital, Bochum, Germany
  • Anne Helme, MS International Federation
  • Elisabeth Kasilingam, European Multiple Sclerosis Platform
  • Professor Melinda Magyari, Danish Multiple Sclerosis Center
  • Professor Maura Pugliatti, University of Ferrara, Italy
  • Associate Professor Carmen Adella Sirbu, Carol Davila Central Military Emergency University Hospital, Romania
  • Professor Per Soelberg Sørensen, Danish Multiple Sclerosis Center
  • Professor Cristina Tiu, Carol Davila University of Medicine and Pharmacy, Romania
  • Moira Tzitzika, Hellenic Federation of People with Multiple Sclerosis, National Rehabilitation Center, Athens, Greece
  • Cristina Vlădău, Association of Patients with Neurodegenerative Conditions, Romania
  • Donna Walsh, European Federation of Neurological Associations

With special thanks to Nicki Abel, MS specialist nurse and member of the Expert Advisory Group, who passed away before the completion of this project but whose insights were invaluable to the development of the pan-European report.

Additional interviewees:
 

  • Paolo Bandiera, Italian Multiple Sclerosis Association
  • Nadia Buchard, The Multiple Sclerosis Association, Denmark
  • Dr Óscar Fernández, Neurologist, Hospital Regional Universitario de Málaga
  • Professor Nikolay Gabrovsky, University Hospital Pirogov, Bulgaria
  • Dr Yolanda Higueras, Neuropsychologist, Hospital Gregorio Marañon
  • Klaus Høm, The Multiple Sclerosis Association, Denmark
  • Vicki Matthews, MS Nurse PROfessional Steering Committee
  • Professor Andrejs Millers, Pauls Stradiņš Clinical University Hospital, Latvia
  • Professor Dinko Mitrečić, University of Zagreb School of Medicine, Croatia
  • Dr Peder Olesgaard, MS carer and retired GP, Denmark
  • Professor Celia Oreja-Guevara, Hospital Clinico San Carlos of Madrid
  • Michela Ponzio, Italian Multiple Sclerosis Foundation
  • Raquel Rodríguez-Rincón, Son Espases University Hospital, Spain
  • Jacobo Santamarta, Spanish Association of Multiple Sclerosis
  • Dr Jaume Sastre-Garriga, MS Centre Barcelona, Spain
  • Anders Skjerbæk, MS Hospitals, Ry and Haslev, Denmark
  • Dr José Luís Trillo, Head of the Pharmacy Service of Primary Care, Department Valencia Clinico-Malvarrosa
  • Professor László Vécsei, University of Szeged, Hungary
This project is funded by Biogen, Celgene, Merck, Novartis and Sanofi. This project is supported by an Expert Advisory Group (above) who have full editorial control and provide their time fro free. Outputs aim to accurately represent a consensus from the Expert Advisory Group and are developed jointly between the European Brain Council and The Health Policy Partnership. All outputs are non-promotional and not specific to any particular treatment or therapy.