Project Description

RETHINKING MS in Europe

MAIN REPORT

RETHINKING MS in times of COVID-19

COUNTRY REPORTS

METHODOLOGY

POLICY ASSESSMENT TOOLS

Rethinking MS in Europe

About Multiple Sclerosis

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.

RETHINKING MS: Main report & country reports

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. The project began in 2018. 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.

On the 6th November 2019, we presented at the European Parliament “MEP Interest Group Meeting on Brain, Mind and Pain”, the evidence collected in the country profiles with the support of the speakers who will be previewing the findings of the RETHINKING MS project. The full event report can be read here.

To download the reports related to Denmark, Italy, Romania and Spain as well as the Rethinking MS in Europe report and the Policy Assessment Tool document, please click the relevant icon at the top of this page. The project was formally launched on the International Day of Persons with Disabilities on the 3rd December 2019 and the Brain Awareness Week which took place on 16-22 March 2020.

Download the RETHINKING MS Info Sheet

RETHINKING MS in times of COVID-19

The COVID-19 pandemic affected us all, but it did not affect us all equally. People living with chronic conditions, such as Multiple Sclerosis (MS), have faced uncertainty and disruptions in their care pathways, and as a consequence, have dealt and will continue to deal with the long-term physical and emotional implications of not receiving optimal care.

The objective of this new chapter “RETHINKING MS in times of COVID-19” is to provide concrete and tangible testimonies from relevant stakeholders – clinicians, MS patients, patient advocates, pharma representatives – impacted by the disruption in care, which proved both an obstacle and an accelerator for the implementation of good practices. 

We highlight how the lives of people living with MS and their families have been affected by COVID-19. In addition to providing a voice to those side-lined by the pandemic response, the gathered testimonies shed light on the need to rethink MS and MS care in terms of coordination, integration and prioritisation in order to ensure optimal care for people living with MS in Europe. Our aim is to contribute to continued awareness raising of MS at EU policy level as well as to feed into the current European policy debate on the direct and indirect consequences arising from the COVID-19 pandemic and encourage stakeholder engagement in EU health policy making. 

The launch of the policy report “RETHINKING MS in times of COVID-19” was accompanied by a virtual exhibition ‘Living with MS during COVID-19: A case for rethinking MS care in the EU’. Through this unique exhibition, you will be able to view portraits of people supporting EBC’s RETHINKING MS call. The portraits feature people living with MS, clinicians, care givers, policymakers and industry representatives who want to make a difference in how MS care and treatment are delivered in Europe. While you navigate the exhibition, you will also come across videos and infographics showcasing the critical need for improved, patient-centred treatment.

Read the paper “RETHINKING MS in times of COVID-19”
Visit the virtual exhibition “Living with MS during COVID-19: A case for rethinking MS care in the EU”

Scientific publications

European Journal of Public Health

Rethinking MS in Europe: Prioritizing integrated services for people with multiple sclerosis
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Journal of Clinical Neurology and Neurosurgery

Rethinking MS in Europe: Prioritising Timely, Integrated Care for People with Multiple Sclerosis
Read More

EBC Rethinking MS Project (2018-2019) in collaboration with
The Health Policy Partnerhip (HPP): a stepwise approach

The project was funded by Biogen, Celgene, Merck, Novartis and Sanofi. This project was supported by an Expert Advisory Group who had full editorial control and provided their time for free. Outputs aimed to accurately represent a consensus from the Expert Advisory Group and were developed jointly between the European Brain Council and The Health Policy Partnership. All outputs were non-promotional and not specific to any particular treatment or therapy.