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In a meeting of the MEP Alliance for Mental Health, held on 10 November, representatives of mental health-related organisations and MEPs underlined the need and voiced their support for a dedicated European Year for Mental Health, to be instigated in the short term.

Background to this event, organised by GAMIAN-Europe, is the general and pressing need to ensure awareness – with policymakers, service providers, the general public – of the importance of mental health in all its aspects, ranging from prevention, to diagnosis, treatment, care and cure.

Maria Walsh MEP, co-chair of the MEP Alliance for Mental Health already referred to need for (and potential of) such a Year in October 2019; speaking in today’s meeting, the stated that ‘now is the right time to launch a strong campaign in order to turn this idea into reality: due to the current COVID-19 pandemic, never before has there been such a concern about mental health and well-being of the population’.

The meeting brought together a small group of relevant organisations to have a first discussion on the potential aims, content and strands of action of a European Year for Mental Health. Discussions also took place on the actions which should be taken to best advocate to ensure that such a Year will become a reality as well as the potential roles of the various participating organisations can play in this campaign.

MEPs Alviina Alametsa, Estrella Dura Ferrandis, Radka Maxova, Alex Agius Saliba, Tomas Zdechovsky, Stelios Kympouropoulos, Brando Bennifei and Katalin Cseh all welcomed the initiative to campaign for a Year and explicitly their support and commitment to ensuring that it becomes a reality.

The results of today’s discussion will now serve to prepare a preliminary outline of aims, potential themes, activities and structure of a European Year for Mental Health as well as of an advocacy plan, both of which will then be discussed in a larger meeting of the MEP Alliance early next year, also involving stakeholders outside the field of mental health.

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The global momentum to deliver a more coordinated response to the threat posed by neurological disorders is increasing.

In 2018, ‘mental health and neurological disorders’ were added to the list of priority non-communicable diseases by world leaders. This has led to some structural changes at the World Health Organisation, with the recent establishment of a “Brain Health” team within the Department for Mental Health and Substance Use. More importantly, earlier this month, the WHO Executive Board (EB) discussed Epilepsy.  A formal Decision was taken to broaden to scope of this work to explore ‘Epilepsy and its Neurological Synergies’. This Decision was endorsed by countries worldwide, including all EU countries. A draft resolution on the matter is now being discussed ahead of the World Health Assembly taking place in May this year. This is a landmark decision and one of the few times that neurological disorders have been considered collectively in such a manner.

During the EB discussions it also became clear that there is a push for bringing mental health and neurology under one umbrella of brain health. To capitalise on this global prioritisation, EFNA,  European Academy of Neurology and EBC organised a meeting at the European Parliament on February 18^th. The meeting was entitled: “Brain Health as a Global Priority – time for the EU to act now”.

The meeting heard the latest statistics from the Global Burden of Disease Study, highlighting how neurological disorders are the leading cause of disability worldwide, and the second leading cause of death. Later presenters highlighted the global trends mentioned above, and how these could be leveraged at EU level. Some concrete examples from the field were also discussed; including successful global advocacy work on epilepsy and national efforts to create a Norwegian Brain Plan.

The event made for a clear and strong signal to EU policy makers that our efforts need to be urgently stepped up. The event’s co-patron and Vice-President of the Parliament Ms. Ewa Kopacz said “We need to act fast and we need to act together!”

High-level representatives from the European Parliament, European Commission and EU Presidencies also reiterated opportunities for this international activity to be reflected in EU initiatives.

At the meeting, a Call to Action prepared by organizers and endorsed by supporting MEPs was announced. The document calls for EU policy makers to acknowledge and use latest data on burden of brain disease, give a higher priority to neurology as well as brain as a whole, develop European and national plans addressing brain health and sustain adequate level of brain research.

You can read the full meeting report here and all presentations can be downloaded on the EFNA website.

In the afternoon, a workshop for convened with invited participants to begin planning an advocacy strategy for neurology in the context of these new opportunities. This work will continue throughout 2020. To learn more, email: advocacy@efna.net

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In light of these elections, EBC has joined many like-minded organizations in producing its own Election Manifesto, a call and reminder to MEPs, old and new, for an improved quality of life for Europeans living with brain conditions.

What many may not realize is that 179 million Europeans live with brain conditions and that these brain conditions put a heavy strain on citizens and healthcare systems across the European Union.

Read the full Manifesto here.

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Today, over 35 million people are estimated to be living with depression in Europe Its cost is 30% higher than that of stroke. Yet as a society, we lack understanding of depression and empathy for those affected. Policies focused on depression exist, but implementation is variable and suffers from significant under-resourcing. This in turn contributes to significant gaps in diagnosis and care: only 25% of people diagnosed with depression receive appropriate and timely care.

These gaps need to be remedied – and require a comprehensive, sustainable policy response, looking at how to prevent and manage depression across all aspects of society.

The organisations listed above joined forces to address this need; they agreed to produce a report aimed at providing policymakers with concrete ways to better address the full spectrum of depression and its impact on our societies.  The report drew from the practical experiences of a variety of innovative projects addressing different aspect of depression across the EU. Key factors and lessons learnt were identified which can help policymakers develop and put in place concrete, relevant and sustainable policies and initiatives.

Today’s event aims to:

• Present the key findings of this report;
• Showcase examples of successful projects addressing depression;
• Exchange views on how depression can be prioritized on the EU and national policy agendas;
• Forge links between relevant stakeholders and explore ideas for future cooperation to ensure better management of depression.

A summary of the report is available below and the full report can be read and downloaded HERE.

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The first speaker was Prof. Albert Gjedde of the University of Copenhagen. His talk covered “The predictive brain and the future: to boldly go where no one has gone before” which explored how the most fundamental questions about the brain still remain unanswered despite the great advances in neuroscience over the recent years. More than ever before, neuroscientists must engage in efforts to test and apply this novel insight into the key functions of the human brain, as part of neuroscience’s continuing mission to explore the challenges that humans face when their brains age.

The second speaker was Prof. Steven Laureys, Director of the Coma Science Group at the GIGA Research and Neurology Department of the University and University Hospital of Liège, Belgium. He spoke freely to the room on his work in consciousness and coma science, and how understanding consciousness remains one of the greatest mysteries for science to solve. He also made the case for continued but starker support from the EU institutions for science and research, asking for continuity in funding and the work being done- breaking free from project-based restraints, allowing for consistency and longer-term research.

The final speaker was Prof. Gaia Novarino, neuroscientist who investigates the genetic and molecular basis of neurodevelopmental disorders at IST Austria, and spoke on how scientists work to find treatments for pediatric neurological disorders. Neurodevelopmental disorders affect millions of individuals from very young ages, and are often refractory to treatments, and despite decades of intensive research disorders such as autism and epilepsy remain poorly treatable. However, in the last years, researchers have found that autism spectrum disorders, epilepsy and mental retardation are often caused by tiny mistakes in the patient’s DNA; genetic information, therefore, may retain the key to reveal potential
treatment options.

A discussion with the audience follow the speakers, and was a great display of interest and curiosity from the full room. Attending neuroscientists and MEPs alike posed questions to our three speakers, the panel and discussants Prof. Roland Pochet and EBC Vice-President Prof. Patrice Boyer.

EBC would like to thank all its partners and collaborators for making this Brain Awareness Week 2018 outreach event an excellent success, as well as all the attendees who took the time out of their day to travel to the Parliament to make the event. We also extend a special thank you to all MEPs that attended the event and took part in the lively discussion.

The full programme with speakers biographies and abstracts can be found here
The event was livestreamed here

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The well-attended and fruitful event was held under the title “The Value of Early Intervention in Brain, Mind and Pain Conditions”,  and included two panel discussions:

The first panel addressed the conclusions and recommendations of EBC’s Value of Treatment research project and White Paper, and explored the value of early intervention, using the case-studies of four disorders – presented from various stakeholder perspectives –and how the EU can support the solutions identified. The panel, led by Paul Arteel (GAMIAN-Europe), included presentations from the Stroke (An epidemiologist and neurologist’s perspective – Dr. Alistair Webb, UK), Multiple Sclerosis (A public health and policy’s perspective – Ms. Vinciane Quoidbach, Belgium), RLS (A patient’s perspective – Ms. Joke Jaarsma, Netherlands) and Schizophrenia (Families’ perspectives – Ms. Aagje Ieven, EUFAMI, Belgium) working groups.

The second panel, chaired by Ann Little, President of the European Federation of Neurological Associations (EFNA), focused on the possible next steps in the Value of Treatment project – exploring the application of the developed methodology to other disease areas e.g. rare diseases or chronic pain, as well as a future focus on interventions such as rehabilitation.

MEP Michał Boni began the discussion by discussing a move and need towards Integrated Care, and Ms Vinciane Quoidbach, Public Health Policy, Research Project Manager Value of Treatment Research Project at EBC presented the Value Proposition of a second VoT project.

The panel then continued into a discussion on potential case studies, addressing unmet needs, with presentations on rare diseases (such as Ataxia): A neurologist’s perspective – Prof. Paola Giunti, UK, Myalgic Encephalomyelitis: A patient perspective – Nancy van Hoylandt, Belgium and Chronic Pain: A researcher’s perspective – Dr. Nick Guldemond, University of Rotterdam.

Before the panels concluded with a Q&A from the audience, Guest speaker Stephane Hogan, Head of Neuroscience, DG Research & Innovation gave his report on the work of the Commission and the continued support and dedication to brain research.

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The global campaign to increase public awareness of the progress and benefits of brain research

Brain Awareness Week unites the efforts of partner organizations from around the world in a week-long celebration of the brain every March. Partners organize creative and innovative activities in their communities to educate and excite people of all ages about the brain and the promise of brain research.

Brain Awareness Week was founded in 1996 by the Dana Alliance for Brain Initiatives. EBC partner, The Federation of European Neuroscience Societies (FENS) joined the celebrations in 2006, administering the grants that the Dana Foundation reserves for participating European organisations.

“Now in its 22nd year, Brain Awareness Week continues to flourish because of participation of partners from around the globe, like FENS, and their commitment to educating the public about the importance of brain research and its critical role in helping people lead healthier, more productive lives.” – Edward Rover, Chairman, The Dana Foundation & The European Dana Alliance.

Find out about Brain Awareness Week in France here.

As part of Brain Awareness Week, EBC, in collaboration with The Dana Foundation, The Belgian Brain Council, The European Psychiatric Association (EPA) and The Federation of European Neuroscience Societies (FENS), organized an outreach event at the European Parliament, Strasbourg on 16 March 2017. The title of the event “Expanding Brain Research in Europe:  A societal Need?” was in parallel to the Lunch debate organized in Brussels on 14 March 2017. The goal of the event was to target MEPs and other decision makers interested in the fields of health, research and innovation. The event was hosted by MEP Anne Sander and MEP Momchil Nekov

The event at Strasbourg consisted of three presentations given by guest speakers: Monica DiLuca, Professor of Pharmacology at the University of Milano and Vice President of EBC,  Marion Leboyer, M.D., Ph.D. is currently Professor of Psychiatry at the University of Paris Est (UPEC) in France and Anne Little,  President of The European Federation of Neurological Associations (EFNA) and Executive Director of The International Bureau for Epilepsy.

The event was highly successful, with a good showing of policymakers, researchers and the general public who openly interacted with each other and the speakers during the hour of open discussion following the presentations.

The abstracts of each presentation are below:

Monica DiLuca – Brain Research in Europe: Our Challenge for the Future

Brain diseases represent a considerable social and economic burden in Europe. With yearly costs of about 800 billion euros and an estimated 179 million people afflicted in 2010, brain diseases are an unquestionable emergency and a grand challenge for neuroscientists. Considering the costs of brain diseases for the European society, and considering that these costs will increase considerably in the coming years due to the ageing European population, one way of curbing this increase and possibly decreasing the costs is via intensified research. Thus, strong basic research in neuroscience and the development of a strong European platform for neuroscience is needed to face brain diseases, which nowadays represent a societal emergency in European countries.

Ann Little— Putting neurology patients at the heart of research

Patients should be involved in helping to shape priorities for research that is ultimately carried out for their benefit. A growing body of evidence suggests that involving patients in research improves the relevance, quality and speed of that research. Furthermore, including patients as top level priorities in order to close the gap between what researchers want to research and what patients want researching is likely to be beneficial for all research.

The Value of Treatment project initiated by the European Brain Council is one excellent example of patient participation in research. The project addresses the burden of disease and the issues in the current healthcare system, and proposes evidence-based and cost-effective solutions to achieve high value for patients. By describing (“mapping”) the patient journey in full detail (by both patients and health care professionals), treatment gaps have been identified which will be addressed in the policy recommendations resulting from this project.

Marion Leboyer— Supporting research in psychiatry in Europe: A major societal issue

Mental disorders represent the single greatest economic and social burden on European society. The cost of mental disorders (excluding dementia and other organic brain disorders) in 2010 was estimated at €461 billion. This is the lowest current estimate for this figure, as it does not take into account the large additional costs associated with having co-occurring mental and physical disorders.

With sufficient investment, mental health research could address the burdens in Europe, especially through research on prevention of mental disorders in young or at-risk populations, on improvement of understanding of causes, on developing new tools for diagnosis and innovative therapeutic strategies, thus promoting positive mental health in the general population. Such approaches have been advocated by the European Parliament and the European Commission, and Prof. Leboyer will outline the most pressing mental health research that takes advantage of Europe’s infrastructure and research strengths, including the EU ROAMER project.

On the evening before the outreach event, 15 March, a networking cocktail reception was also held by EBC member, The European Psychiatric Association (EPA) at their Strasbourg Headquarters.

A video containing the highlights of the event can be found on the EBC Youtube channel, and shared below:

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Joop van Griensven (Pain Alliance Europe) welcomed participants and thanked all those involved with obtaining signatures for the Written Declaration on Access to Employment for those affected by neurological disorders and chronic pain conditions. Some 180 signatures were gathered, and while this is not enough for adoption of the Declaration by the European Parliament, this result is positive nevertheless. The work will continue as the Written Declaration will now become a Call to Action (#makeworkwork).

Raquel Cortés Herrera (European Commission, DG EMPL) who presented the rationale and content of the Social Pillar. As the Pillar is in the process of being adopted, it is not possible to prejudge the final content and format, but Raquel Cortés did underline the current Commission’s commitment towards social policy, with the Social Pillar being the most prominent example of this commitment. It will determine the current Commission’s mandate and activity in the social arena.

The structure of the Pillar is based on a thematic approach, set out in three main chapters:

1. Equal opportunities and access to the labour market: This includes skills development, life-long learning and active support for employment.
2. Fair working conditions: Needed to establish an adequate and reliable balance of rights and obligations between workers and employers.
3. Adequate and sustainable social protection: This includes access to health, social protection benefits and high quality services, including childcare, healthcare and long-term care, which are essential to ensure a dignified living and protection against life’s risks.

Donna Walsh (European Federation of Neurological Associations) then spoke. She briefly introduced the focus areas of the MEP Interest Group on the Brain, Mind and Pain, i.e. stigma, quality of life (employment, education), patient involvement and research. EFNA has submitted a joint response with Pain Alliance Europe to the Social Pillar consultation. EU social legislation is central to employment and educational opportunities for those affected by brain, mind and pain disorders. She underlined that health at work is not just a socio-economic issue. In order to avail of the opportunities to access employment that the European Social Pillar could provide, people living with brain, mind and pain disorders need early and accurate diagnosis as well as appropriate treatment and management. Big health inequalities persist across the EU; for instance, two thirds of people with brain disorders receive no treatment and 40% of people with chronic pain report that it is not adequately controlled. Therefore, the EU and its Member States must acknowledge that accurate, early diagnosis and appropriate treatment/management are necessary to enable those with chronic conditions to optimize the social acquis covered by the European Social Pillar.

The next panelist, Andreea Antonovici (European Multiple Sclerosis Platform), briefly introduced her organisation and its work in relation to employment, such as a Call to Action on Access to Employment for People with MS was launched in 2015, supported by over 70 MEPs and the ‘Believe and Achieve’: a paid internship programme aimed to create opportunities for young people with multiple sclerosis to develop their professional skills through partnerships with businesses across Europe. In relation to the Social Pillar, EMSP has submitted a response which focuses on the need to tackle inequalities and make the necessary changes to make sure EU legislation is being applied at national level in order to put an end to discrimination. EMSP pledges for the empowerment of people with disabilities as they need to have access to the right tools and information in order to stand up for their rights. As already underlined by Donna Walsh, because there is no common definition of disability, accepted and implemented in all Member States, determining eligibility for income maintenance is still difficult. This leads to employers finding gaps in the law and patients being discriminated.

The final panelist was Katie Gallagher (European Patients’ Forum), who briefly introduced her organisation and its mission. EPF’s vision is that all patients in the EU should have equitable access to high-quality, patient-centered health and social care. One of the most pressing and social priorities is the need to develop a supportive working environment for patients. Patients can face stigma or discrimination at work at various stages which prevents them from entering/remaining in the labour market. Ensuring that workplaces offer support for patients is crucial to achieve Europe2020’s goal of “smart, sustainable and inclusive growth”

The final speaker, Sam Kynman (European Pain Federation EFIC) gave a brief presentation of his organisation’s campaigning and advocacy work to raise awareness of the personal and societal impact of pain. EFIC will organise a large symposium during the Maltese EU Presidency (where the Maltese President will speak), as a direct result of advocacy efforts. The Italian Presidency (2014) also paid attention to pain and its impact and EFIC will concentrate on the Estonian Presidency next. These are small but necessary steps which will create the required momentum at some point – someday pain may be used as an indicator for health policies across the EU.

In conclusion, Nessa Childers MEP (left) called on participants to keep on raising their voices and stimulating awareness as many of the health conditions that have an impact are still not visible enough. We need to work together as the more these topics are spoken about the more impact they will have.

Marian Harkin MEP closed the meeting with two messages: the first related to the importance of connections, i.e. MEPs feeding all comments on the Social Pillar presented today into the system that would eventually produce a Social Pillar, connecting to the right people to put the messages across (like in the Maltese example) and connecting the important work of OSHA to the work done by the NGOs, which is a two-way process. The second related to the fact that it is the responsibility of us all to ensure a social Europe in the future, where the voice of citizens counts.

 To read the full report written by Brain, Mind, Pain click here.

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