What’s next for Brain, Mind and Pain? DONNA WALSH EFNA EXECUTIVE DIRECTOR

Background Group set up in 2014 and launched in 2015. An initiative of the European Federation of Neurological Associations and Pain Alliance Europe. Aim: To encourage research into and access to innovative treatments, promote prevention and self-management approaches, decrease stigma and work together to improve quality of life for people living with these disabling conditions. Co-chairs: Marian Harkin, Jeroen Lenaers, Daciana Sarbu and Jana Zitnanska.

Some successes to date… 13 meetings in the European Parliament with an average attendance of 50+ participants from a multi-stakeholder background at each event – including active participation of many MEPs and representatives from the EU Commission. Over 50 MEP supporters for the Interest Group – as well as Commissioner Andriukaitis, who met the group and issued a statement of support. Launch of a Written Declaration, supported by almost 180MEPs on access to employment. Submissions to consultations on the European Social Pillar, EU Cooperation on Health Technology Assessment, Pathways for Reintegration of Workers following Injury or Illness, Societal Impact of Pain thematic network, etc. Accepted amendments to the EU Strategic Framework on Health and Safety at Work and the Joint Statement on Employment for People with Chronic Diseases.

Some successes to date… Invited to participate in Chrodis+ work package 8 (employment and chronic diseases) and Dying to Work campaign. Development of partnerships with other organisations e.g. GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe), the European Patients’ Forum, the European Brain Council, the European Academy of Neurology and European Pain Federation…. Provision of a policy platform for our members and partners to highlight their concerns, work and examples of best practice. Representation by the group at external events and high-level meetings. Requests for the group to endorse various initiatives. Presence at EU Health Policy Platform.

Eradicate stigma, isolation and discrimination One of the main vehicles to drive EFNA and PAE advocacy work Challenges and policy priorities of Interest Group set out in Book of Evidence A need for update – reflecting new evidence and changing political landscape Thematic Areas 2019-2024 Eradicate stigma, isolation and discrimination Ensure equitable access to treatment, services and supports Promote patient empowerment for increased involvement and engagement Book of Evidence - framework for advocacy actions over the past 4 years

Eradicate stigma, isolation and discrimination Emphasize equitable access to employment (non-discrimination at work) EU should continue to play an active role Implementation of the EU Social Pillar Use of European Semester to push healthcare action with socio-economic benefit Support other European Commission (DG EMPL) initiatives: ‘EU Empowers’ Youth Employment Initiative Accessibility Act and EU Disability Strategy European Structural Funds to finance initiatives in the area of inclusive employment (Focus on ESF+ [European Social Funds for Health]) Continue fight to eradicate stigma and isolation Stigma and isolation 2-3 issues for young people in EFNA survey PAE survey in 2018 Implementation of … by MS, including opportunities in the areas of work-life balance (carers leave) as well as a discussion on disability leave (not just sickness leave) Use of the EU .. benefit, e.g. on economic benefits of providing employment support to young people with chronic conditions. CHRODIS + again EU Empowers: DG EMPL and DG JUST are working together to create an awareness campaign, targeting employers, on discrimination at work, as part of the ‘EU Empowers’ programme. This will focus on discrimination broadly, but will include disability. The Youth Employment Initiative could be leveraged, as well as the upcoming Accessibility Act (which may be pared down at the request of the MS). EU disability strategy will be also revised Push MS to use the EU Structural Funds to finance initiatives in the area of inclusive employment. The European Semester process could play a role here. The Institute for Employment Studies (IES) (British centre of research and consultancy on human resources and employment.) approached EFNA – they would like to look at fluctuating chronic d. like epilepsy or MS and looks at aspects such as underemployment, economic impact and what policies could help. Continue fight to eradicate the stigma and the isolation these disorders can create…. EFNA’s Survey of Young Europeans with Neurological Conditions following access to treatment – links with next slide

Ensure equitable access to treatment, services and supports Access major concern for those living with neurological & pain conditions Continue focus on HTA as EU moves towards increased cooperation Partners working on topic e.g. EPF/PACT and EAFPA EAN project Neuro-Care to assess the present situation in terms of healthcare provision to neurology patients across the EU Dissemination and operationalization of EBC’s Value of Treatment 2017 PAE survey on access & 2018 EFNA survey of young people show ‘access’ as challenge Inequity… effective treatments: new joint report by the OECD, World Health Organization (WHO) and the World Bank: Low quality healthcare is increasing the burden of illness and health costs globally. Poor quality health services are holding back progress on improving health in countries at all income levels, according to a

Promote patient empowerment for increased involvement and engagement RESEARCH: Launch of the Horizon Europe – Research Funding Programme INCL. FOCUS ON DIGITAL Digital agenda is of growing importance – healthcare dimension must be integrated into debate. Patient perspective on its application to improve: Digital tools for patient empowerment E-health solutions to help patients’ self-management and adherence Facilitating participation in their own healthcare Leading to early detection, providing treatment/care and generating big healthcare data Involvement in policy and decision-making but also in R&D …. and engagement in own care Promoting Patient Involvement and Engagement – through existing and new channels Particlar focus in 2019 - linking to EFNA’s existing initiatives - TINA (esp. HTA) and other initiatives in which EFNA will play a role (e.g. EBRA and MULTI-ACT)

All advocacy should be positioned within context of global priorities SDG 3: Ensure healthy lives and promote wellbeing for all at all ages 3.4 By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being. NCD: Also known as chronic diseases, tend to be of long duration and are the result of a combination of genetic, physiological, environmental and behavioural factors In addition to 3 thematic areas, also important to be placed within the wider context of healthcare priorities at the global level. However, historically, the neurological disorders have struggled to be included in initiatives on NCDs. With the global priority turning more and more to NCDs, we need to ensure that neurology is part of this conversation – looking beyond the EU Institutions to the WHO and the OECD, for example. And also aligning with work on the SDGs, esp. SDG3.4 that aims by 2030 at reducing by 1/3 premature mortality linked to NCDs through better prevention and treatment as well as promoting mental health and wellbeing.. 12.2017 paper on preparation for the 3rd High-level Meeting of the GA on the Prevention and Control of NCDs, to be held in May 2018. The paper builds on the WHO NCDs Montevideo conference from November last year In line with WHO previous approach, report addresses… (and in some exceptions also mental health).

Let’s join the dots… #BrainMindPain www.brainmindpain.eu