HPP has revealed early findings from a new project on multiple sclerosis (MS) in partnership with the European Brain Council (EBC).
Senior Researcher Christine Merkel presented the work today (21 June 2019) at the Annual Rehabilitation in Multiple Sclerosis (RIMS) Conference. Among the highlights of her presentation were findings around barriers to uptake of rehabilitation and variations across Europe.
HPP’s partnership with EBC follows on from The Value of Treatment for Brain Disorders, a project undertaken by EBC from 2015 to 2017 which looked at nine neurological disorders. Building on this study, the new work explores practical ways that the findings can be translated into policy to improve the lives of people living with MS across Europe.
MS is a complex and progressive disease of the central nervous system whereby the immune system destroys brain, optic nerve and spinal cord tissue, often causing irreversible disability. It has a young age of onset, with diagnosis typically occurring between the ages of 20 and 40. This means it presents challenges that intersect health, social and employment policies. The disease can affect almost every aspect of day-to-day life, and its impacts rise significantly as the condition progresses and disability worsens.
The HPP/EBC project focuses on unmet needs of people with MS in three key areas: timely diagnosis and personalised treatment and care; interdisciplinary and coordinated approaches to care; and participation in daily life.
HPP is leading on the research elements of the project, which is overseen by an expert advisory group of 15 people from nine European countries, representing people with MS and professionals from neurology, research, nursing, rehabilitation and other disciplines. Alongside desk research and interviews with experts from across Europe, the project involved multi-stakeholder round-table meetings in four European countries to consult on research findings and identify national priorities.
The project’s outputs will include a pan-European policy narrative, country profiles for four European countries, and policy ‘blueprints’ that set out how the policy priorities for each country can be achieved. These resources will all be launched at an event in Brussels on 6 November 2019.
The 2019 RIMS Conference takes place in Ljubljana, Slovenia, on 20–22 June 2019. It is Europe’s main event for healthcare professionals, researchers and patient representatives to share knowledge and collaborate on topics related to rehabilitation in MS.