Brain Awareness Week (16-22 March 2020)
The European Brain Council and The Health Policy Partnership launch the RETHINKING MS project on the occasion of Brain Awareness Week 2020. RETHINKINGMS, a pan-European report offering tangible policy changes to improve the lives of people living with MS across Europe went live this week, accompanied by dedicated country profiles, which were previously presented in November at the European Parliament, hosted by the MEP Interest Group on Brain, Mind and Pain.
Multiple sclerosis (MS) affects over 750,000 people in Europe – among the highest prevalence and incidence rates in the world. 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.
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.
“We must ensure that every person with MS in Europe has their needs met for timely diagnosis and personalised treatment, interdisciplinary and coordinated care, and adaptable support in daily life. To achieve this, we need to seamlessly blend healthcare, social care and rehabilitation in a way that truly meets each individual’s unique set of needs, goals and circumstances.”
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.
The European Brain Council (EBC) and The Health Policy Partnership (HPP) have 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.
MS is an inflammatory disease, which causes damage to (demyelination and scarring) nerve axons in the brain and spinal cord. A variety of neurological symptoms associated with MS result from a weakening ability of the cells to conduct nerve signals. MS can cause disability progressively over time, including difficulty with mobility and upper limb function, bladder, bowel, and sexual dysfunction, speech and swallowing, vision and cognition. Treatment reduces the symptoms, but currently there is no cure to stop the disease. Even with advances in medicine, it remains difficult to diagnose MS with certainty.