Turning principles into actions: best practice in reducing health inequalities

Friday, 19 November, 10.00-13.00 CET, hosted via Conference+


Missed this event? Watch the full recording here


Opening Plenary

Ms Sandra Gallina, Director General for Health and Food Safety (DG SANTE)

Ms Sandra Gallina, Director General for Health and Food Safety (DG SANTE)

On 19 November 2021, the MEP Interest Group on Brain Mind and Pain (BMP) hosted a virtual event entitled “Turning principles into action: best practice in reducing health inequities”. The event’s main objective was to discuss how the Interest Group can advance meaningful policies and interventions to address the drivers of health inequity, whilst taking a practical look at examples of best practices that can be scaled up and applied to these disease areas. The event was attended by EU policymakers, healthcare professionals, patient organisations and industry representatives.

Ms Sandra Gallina, Director General for Health and Food Safety (DG SANTE), addressed the audience and presented the European Commission’s commitment to reduce health inequity and promote sustainable wellbeing across all EU Member States. Moreover, she thanked the MEP Interest Group for shining light on such an important topic that directly and indirectly affects society.

Sir Michael Marmot, Director of the University College London Institute of Health Equity

Sir Michael Marmot, Director of the University College London Institute of Health Equity

Sir Michael Marmot, Director of the University College London Institute of Health Equity. sent a supporting message, focusing on the impact of the Covid-19 pandemic on health equity and the further strain it placed on the existing fragile systems. Sir Marmot noted the importance of recognising the underlining social determinates of health and outlined the actions and mechanisms that should be taken to address them through “building back fairer”.

Panel Debate: Advancing meaningful policies and interventions to address drivers of health inequity

Panel speakers
Moderator: Anya Sitaram

  • Dr Nicole Valentine, WHO Programme Lead, WHO Multicountry Special Initiative for Action on Social Determinants of Health for Advancing Equity
  • Ms Dorota Sienkiewicz, Senior Policy Coordinator EuroHealthNet
  • Ms Astri Arnesen, Executive Director, European Huntington Association
  • Ms Nadia Malliou, PAE Board Member and Secretary General of the Hellenic League Against Rheumatism
  • MEP Sirpa Pietikäinen (FI, EPP), Co-chair of the Interest Group

During the discussion, Dr Nicole Valentine highlighted that social and economic policies cause health inequalities. Referencing a pre-Covid-19 pandemic Report on Health Equity Status, published by WHO Europe, she noted that many European countries had stagnated or made very little progress with regard to social protection. WHO is now developing interventions on how to address inequalities through a “multilevel” approach, which means not only addressing social inequalities, but also inequalities in health and the barriers that communities and community organisations face in accessing the correct services.

Ms Dorota Sienkiewicz stated in her intervention that health inequality between and within Member States results from adopting downstream solutions instead of systemic changes that could offer the best value for what can be offered across Europe. Under the Third Health Programme, a EuroHealthNet Joint Action on Health Equity in Europe was funded and research carried out within this context found that many countries included some reference to health equity in a legislative document. However, this was not seen to be translated into coordinated, coherent action across policy levels Ms Sienkiewicz highlighted that political mandates on health equity need to come from an executive level, with all actors working together to reach a common goal.

Ms Astri Arnesen and Ms Nadia Malliou shared their experience with BMP disorders. Ms Arnesen began by sharing her family history and personal experience with Huntington’s disease, focusing on stigma and its impact on patients and their families and carers. Moreover, she noted the “invisibility” of BMP disorders that impact how society reacts to these diseases, including from an

MEP Sirpa Pietikäinen (EPP, FI), Co-chair of the Interest Group

MEP Sirpa Pietikäinen (EPP, FI), Co-chair of the Interest Group

employment perspective. Ms Nadia Malliou echoed Ms Arnesen’s points, further stating the unique and important narrative of the patient’s perspective. As a chronic pain patient, she explained the challenges she has faced during the pandemic with regard to access and the high cost of treatment.

MEP Sirpa Pietikäinen (FI, EPP) highlighted during her intervention the importance of understanding the patients’ needs, highlighting that only those who are impacted with constant pain can understand the psychological effects of this on a day to day basis. Ms Pietikäinen explained that health inequalities still exist in Europe today, especially with regard to correct and timely diagnosis, further noting the importance of developing a roadmap for neurological and chronic pain at a European level.

Presentation of best practices in the areas of stigma, access and patient empowerment

Frances Fitzgerald MEP. Photo Chris Bellew /Fennell Photography Copyright 2020

Frances Fitzgerald MEP.
Photo Chris Bellew /Fennell Photography Copyright 2020

In advance of the annual conference of the Interest Group, the Group launched a call for examples of best practices in the fields of neurological and chronic pain. The best practices focused on the three priority thematic areas of the Interest Group (stigma, access and patient empowerment) and had to address specific challenges of the patient community. The assessment of each proposal was made by a Selection Panel composed of a multi-stakeholder group with extensive expertise and professional experience in policy and advocacy.

Before the presentation of the best practices, each thematic area was introduced by a high-level speaker, including Ms Astri Dentler, Member of Cabinet of Commissioner Dumbravka Šuica, Ms Marta Andreykiv Senior Director, Global Market Access at Teva, and MEP Frances Fitzgerald (IE, EPP).

The selected best practices under each thematic area are as follows:

Stigma, discrimination and isolation

  • Federación Española de Párkinson (FEP) (Spanish Parkinson’s Federation) developed and implemented an awareness campaign campaign called “#TagOnAPositaveLebal”, which sought to raise awareness of the importance of a patient’s emotional and psychological health.
  • The ME/CFS Netherlands Foundation’s best practice brought together young patients with ME suffering from extreme fatigue and healthy peers. Through a community service internship that both groups undertake, they address discrimination and stigma whilst showing that ME patients have a meaningful contribution to society.

Access to treatment, service and support

  • MS21 is an initiative supported by Merck, aiming to gain real-world, actionable insights into unmet needs in managing multiple sclerosis (MS), from the perspective of healthcare professionals (HCPs) and people living with MS.
  • ‘Plain Talking’ is an awareness campaign initiated by European Pain Federation (EFIC), targeting both clinicians and people living with chronic pain. As part of the campaign, a Health Literacy Working Group is working to increase awareness about the concept and impact of limited health literacy.

Patient empowerment

  • The ADHD Women Project is the initiative of two patient organisations from Belgium and Germany, empowering women living with a neurological condition to engage more effectively in shared decision-making.

To  find out more about the selected best practices, please click here.

Interactive discussion on presented best practices and next steps

Participants at the event had the opportunity to have an open discussion on the presented best practices and also the importance of the patient voice at a European level, especially in reinforcing primary healthcare systems and ensuring patients are empowered and meaningfully involved from day one of diagnosis.

Ms Astri Arnesen further noted the importance of health literacy and using the patient voice to develop inclusive healthcare services that address patients’ unmet needs. Ms Brona Fullen (EFIC) highlighted the inclusion of health literacy as a critical topic in the EFIC curriculum for 2022 to allow all healthcare professionals to develop core skills that ensure appropriate communication with chronic disease patients.

Representatives from the Spanish Parkinson’s Federation and MC/CF Netherlands discussed their ongoing work to influence change nationally and highlighted that these initiatives could be replicated on a larger scale.

The discussion concluded with Mr Tadeusz Howrot, Senior Advocacy Advisor for EFNA, noting the WHO upcoming Intersectoral Global Action Plan on epilepsy and other neurological disorders 2022 – 2031.  The Plan has a 10-year global implementation phase, which includes the European Region, with a target for all countries to have at least one functioning awareness-raising campaign for advocacy programs in neurology. Mr. Howrot stated that this would be an excellent tool for neurological advocacy, and it will be critical to engage governments to make sure patients are involved in designing such programs.

Concluding remarks

MEP Tilly Metz (Greens/EFA, LU), Co-chair of the Interest Group

MEP Tilly Metz (Greens/EFA, LU), Co-chair of the Interest Group

The co-chair of the Interest Group, MEP Tilly Metz (LU, Greens/EFA), closed the event by calling for a more holistic approach in the fight against health inequalities and the need for independently collected data to create targeted policies and better understand health inequalities across the EU Member States. MEP Metz also noted how health inequalities range from stigma, isolation and discrimination to improving education and information as well as gender equality, highlighting the need for specific mandates to address social health inequalities during Covid and beyond.

The event was concluded by Ms Joke Jaarsma, President of EFNA. Ms Jaarsma noted the critical points raised during the event, including the importance of social determinants in health, the need for tailored treatments, and the importance of hearing the experiences of patients.

Achieving health equity after the Covid-19 pandemic, June 2021

Achieving health equity after the Covid-19 pandemic, June 2021

15 June 2021

Opening plenary

On 15 June 2021, the MEP Interest Group on Brain, Mind and Pain organised a virtual working session entitled “Achieving health equity after the Covid-19 pandemic”. The event’s main objective was to understand the long-term impact of the Covid-19 outbreak on different population groups affected by BMP disorders, and to define and frame the inequalities and challenges they experience. The working session was attended by EU policy-makers, healthcare professionals, patient organizations and industry representatives.

Attendees were welcomed by Ms Joke Jaarsma, President of the European Federation of Neurological Associations (EFNA). Ms Jaarsma highlighted in her opening remarks that the Covid-19 pandemic has further strained health inequalities within the EU and its Member States, impacting deeply people living with BMP disorders. Ms Jaarsma also underlined the need to urgently address these inequalities, touching upon the complexities of healthcare disparities and the required political commitments.

Mr Joop van Griensven addressed the audience for the last time in his capacity as President of Pain Alliance Europe (PAE). Mr van Griensven discussed, in more detail, the impact of Covid-19 on BMP patients and vulnerable groups, highlighting that the aftermath of the pandemic will be a critical point in ensuring that those living with life-limiting conditions are not socially excluded and are meaningfully involved in all policy discussions. Mr van Griensven also took the opportunity to look back at the past nine years, and reflect on the long way that the Interest Group has come from its launch to present times.

Following these introductions, Ms Donna Walsh, Executive Director of EFNA and Ms Deirdre Ryan, Presidential Candidate of PAE presented the results of two recent surveys that looked at the impact of Covid-19 on those living with neurological and chronic pain in Europe. The two surveys had similar findings, with almost 45% neurological patients and 48% chronic pain patients experiencing difficulties in receiving appropriate care during the pandemic. Additional respondents’ concerns and fears included long waiting times to see specialists, the impact on mental health/social isolation, medicine shortages or increased use of digital technology. Based on these results, EFNA and PAE presented their key conclusions and recommendations to policy-makers.

MEP Tilly Metz

After the initial presentations, the audience was provided with the EU institutional perspective by Ms Katarzyna Ptak-Bufkens from the European Commission and the Interest Group’s co-chair, MEP Tilly Metz (Greens / EFA, Luxembourg). Both representatives stressed their personal and professional interest in the topic. Ms Ptak-Bufkens referenced some of the Commission’s ongoing complementary policy tools to address health inequalities, including the European Pillar of Social Rights and Action Plan, and the Health Systems Performance Assessment (HSPA), highlighting that a ‘one size fits all’ solution is impractical and that tools should serve the national and subnational context and help those most vulnerable. MEP Metz welcomed Ms Ptak-Bufkens’ remarks while strongly emphasising the importance of putting non-communicable and chronic diseases, such as BMP disorders, at the forefront of future-proofing and building resiliency of European healthcare systems.


Parallel workshops

Following the opening plenary, three parallel workshops allowed for a more interactive discussion on the Interest Group’s core themes: stigma, access and patient empowerment. Inspired by the design thinking methodology, these key themes were “matched” with different population groups prone to experiencing healthcare inequities: younger and older people, vulnerable groups impacted by geographical disparities, and women with BMP disorders. Based on desk research and interviews with patients from each population group, patient personas were developed and their experiences were discussed during the workshops.

Participants at the workshops were then asked to identify which of the challenges experienced by the personas were the most feasible to solve. Attendees also contributed to the discussions and co-decided the right level of engagement and the resources needed to address them.

Through this exercise of gathering insights from different players in the healthcare arena and promoting a co-decision approach, the challenges experienced by people with BMP disorders were better framed, and this will ultimately contribute to identifying more person-centred solutions.

#1: “Covid-19 and the future of ageing: intergenerational connections” (stigma, discrimination and isolation)

Participants in this workshop agreed that the most solvable challenge in the short term for ageing patients was the lack of public awareness of BMP disorders, highlighting that better information, including via improved digital literacy, could contribute to increased social inclusion. Moreover, a better understanding of BMP disorders among the general public and policy-makers would help prevent stigma and discrimination​ on a day-to-day basis. In the participants’ opinion, addressing this challenge should happen at EU level and be driven by patient organisations, with the support of multiple stakeholders to amplify impact​, while ensuring coordination and resonance at local level. For this to become a reality, patient voices and their testimonials should be at the heart of any solution. At the same time, the Covid-19 pandemic should serve as a wake-up call to policy-makers to strengthen healthcare systems and ensure no one is left behind.

#2: “Addressing access challenges and geographical disparities experienced by vulnerable groups across Europe” (access to treatment, services and support)

 At the beginning of the workshop, Mr Stanimir Hasardzhiev, Secretary-General of the Patient Access Partnership (PACT), delivered a presentation on “Addressing access challenges and geographical disparities experienced by vulnerable groups across Europe”. Mr Hasardzhiev also took the opportunity to provide a brief introduction to PACT, and the organisation’s Model Access Solutions initiative, which seeks to identify and promote selected evidence-based, workable solutions for better access to healthcare.

During the workshop, participants discussed the geographical disparities and access challenges that people living with BMP disorders experience, and identified the lack of appropriate information on the disease and its management as the most solvable challenge in the short term. Participants have highlighted that in order to address this unmet need, no legislation changes are necessary. Moreover, patient organisations at national level can take the lead and ensure that patients have access to relevant information, thus supporting them in making informed decisions that will ultimately improve patient outcomes. 

#3: “Empowering women with BMP disorders and carers in the aftermath of Covid-19” (patient empowerment)

Ms Peggy Maguire, Director General of the European Institute of Women’s Health, opened the workshop with a presentation on “Health Promoting Gender Equity in EU Health Policy”, and referenced figures and studies highlighting the gender gaps in BMP research in Europe, including women’s under-representation in clinical trials. Ms Maguire concluded her presentation by sharing a snapshot of recent policy developments on the topic. 

During the workshop, participants agreed that in order to improve patient empowerment among women with BMP disorders, the lack of communication with healthcare professionals was the most solvable challenge to address in the short term. Based on the discussions, there was a consensus that healthcare professionals were too quick to incorrectly diagnose depression and mental health problems among female patients. Participants noted that to achieve a feasible and pertinent result, beneficial both in the short and long term, raising awareness and educating healthcare professionals is crucial. Through activities at local level, such as educational workshops and awareness-raising campaigns, communities can tackle the stigma that women’s health is somehow lesser. These interventions should be based on a multi-stakeholder approach with cross-sectional cooperation from policy-makers, healthcare professionals, patients and those most vulnerable.  


Next steps

Based on the identified challenges, the Interest Group will now look to assess how EU-level action can help to support the advancement of the priority issues identified. Best practice interventions in the wider healthcare space will be sought via desk research and a call for solutions. Shortlisted solutions will be presented and discussed with key stakeholders at the next meeting of the Interest Group that will take place on 19 November, and will form the basis of the MEP Interest Group’s direction/workplan in 2022.

MEP Jarosław Duda

Closing remarks

The co-chair of the Interest Group, MEP Jarosław Duda (EPP, Poland) closed the event by calling for attendees to take all the ideas discussed forward in order to address the complex needs of people with neurological and chronic pain disorders in Europe. MEP Duda noted the importance of raising awareness of BMP disorders to reduce stigma and discrimination, highlighting the need to move towards increased health equity in a post-Covid world.

Before concluding the event, EFNA awarded Mr Joop van Griensven the Lifetime Achievement Award for his tireless work and support in raising awareness and improving the lives of those living with chronic pain.

The future of brain, mind and pain advocacy, Nov 2020

The future of brain, mind and pain advocacy, Nov 2020

10 November 2020

On 10 November 2020, the MEP Interest Group on Brain, Mind and Pain (BMP) organised a virtual event on the future of BMP advocacy. Given the current context, which is increasingly impacting the healthcare policy landscape, the main objective of the event was to identify and leverage public health priorities and actions for those affected by neurological and chronic pain conditions. The event also sought to provide an overview of the Interest Group’s new policy direction, and was an opportunity to launch a set of appendices to update the group’s central policy document – the Book of Evidence. It also aimed to gather feedback on its Roadmap to Change, which is a plan for action for the next two years.

The virtual meeting brought together key stakeholders from the BMP community, other disease specific groups and relevant third-party organisations. High level policy makers also attend, including: Dr Bente Mikkelsen – World Health Organization, Mr Stefan Schrek – European Commission, Katarzyna Ptak – European Commission, MEP Isabel Wiseler-Lima (Luxembourg, EPP), MEP Cristian Busoi (Romania, EPP), MEP Tilly  Metz (Luxembourg, Greens/EFA) and MEP Marisa Matias (Portugal, GUE/NGL). MEP Sirpa Pietikäinen (Finland, EPP) and MEP Kateřina Konečná (Czech Republic, GUE/NGL) also shared their input and sent video messages.

The opening plenary was an opportunity to better understand and discuss the place of BMP disorders in non-communicable disease policy, as well as their position within the EU health and research priorities post-pandemic. Following this session, three parallel breakout sessions took place that allowed for more interactive discussions focusing on the core themes of the Interest Group: stigma, access and patient empowerment.


Key take-aways and outcomes

During the event, there were a number of cross-cutting issues that were identified as key priorities for the Interest Group over the next two years. These issues are as follows:

  • The low awareness of the true burden of BMP disorders is the biggest challenge that the community is facing across all three thematic areas, highlighting the importance of ensuring recognition of the burden of these disorders, as well as the need for more resources and effective policies.
  • Given that BMP disorders are responsible for the largest disease burden among non-communicable diseases, the Interest Group should expand its advocacy efforts and raise awareness around the integration of BMP health into EU / global priority areas in NCDs.
  • Covering the healthcare needs of people with BMP disorders during the COVID-19 recovery is more critical than ever, and the Interest Group must ensure that these needs are addressed and part of the COVID-19 recovery plan across the EU, benefitting at the same time from the increased EU budget for healthcare.
  • Uniting and strengthening the voice of the broader community, as well as developing new synergies with patient/public health organisations, policy and decision-makers, medical societies and other relevant stakeholders will be key to overcome the challenges that people living with BMP disorders are currently facing.


Stigma: Getting those affected by BMP disorders re-integrated in society and back to work post-pandemic

  • Although stigma, discrimination and isolation of people with BMP disorders are reportedly high under normal circumstances, the COVID-19 pandemic has worsened the situation for many patients, and highlighted the need for coordinated action to overcome these issues.
  • The lack of understanding, awareness and recognition was identified as the main challenge faced by people living with BMP disorders, and was seen as being connected to the under-estimation of BMP disorders prevalence and impact. The invisibility of the conditions reinforces their devastating impact on people, their families and carers.
  • Participants discussed the impact of gender bias on stigma and isolation of people with BMP disorders, as well as the need to consider more specifically the role that gender differences play in brain and mental health and how it can be addressed.
  • Adopting policies and implementing actions that strengthen the social inclusion of people with disabilities and patients suffering from BMP conditions through improved access to flexible employment and education opportunities should be a priority area for the BMP Interest Group.
  • Education and awareness of employers, younger generations, policy-makers and healthcare professionals to reframe the economic and societal impact of BMP disorders are essential steps towards ensuring greater social inclusion of people with BMP disorders.

Access: Building forward better – creating more resilient health systems post-pandemic to ensure equitable and timely access to treatment, services and support

  • The underfunding of treatment, services and support represents the main challenge that the BMP community is experiencing in the area of access. In order to overcome this, the Interest Group could facilitate more consensus on the models of care which are cost-effective.
  • To overcome challenges in access, the Interest Group should also continue advocating for neurology / chronic pain-related action plans to be integrated into broader health strategic frameworks.
  • Working together with medical societies is key for generating evidence on the burden of BMP disorders, as well as the lack of workforce to support patients. Where evidence already exists, it is important to ensure that it is used as cohesively and efficiently as possible.
  • Partnerships with the medical community are also essential to address the low awareness of BMP disorders among healthcare professionals, and advocate for better training and continuous education programmes.
  • Digital solutions can support healthcare delivery across all stages of the patient pathway by facilitating more personalized treatments, ensuring better access to care and measuring health outcomes.
  • Improving timely access based on patient preferences and reforming patient care pathways to support better health outcomes should be prioritized in the future plans of the Interest Group.

Patient empowerment: Ensuring the digital transformation of healthcare in the EU promotes patient empowerment

  • In order to address the lack of trust among BMP patients in the area of data governance, the Interest Group should advocate for increased patient involvement in the discussions led by the European Commission around a regulated data framework, which should respond to the needs of the BMP patients and encourage the adoption of self-management solutions.
  • Health literacy improvement and the quality of patient information on BMP disorders should be addressed by the Interest Group through identifying best practices on patient empowerment, and launching awareness raising campaigns and educational programmes with a focus on the needs of BMP patients . This could strengthen structured dialogue and enable collaboration with healthcare professionals.
  • The equitable access to digital health literacy will be essential in empowering BMP patients. The Interest Group should advocate for the new ways of interactions that are being developed, such as telemedicine, to not exacerbate the existing inequalities, but encourage meaningful and tangible engagement.


Next steps

Based on the feedback received during the event, the BMP Interest Group has finalized the Book of Evidence appendices, as well as the Roadmap to Change, which are now published here.

Starting 2021, the Interest Group will develop and share with all members, partners and relevant stakeholders a detailed project plan and timelines for further activity across the three thematic areas.

In the meantime, as part of its Training Initiatives for Neurology Advocates [TINA], the European Federation of Neurological Associations has created a series of e-learning modules, which aim to quickly upskill patient advocates on how they can effectively advocate in a virtual world A first module on ‘EU Advocacy for the BMP Community’ is available now and provides an overview of how the EU institutions work, how patient groups can influence policy-makers of get involved on EU level. Further modules will be released in the coming weeks. To sign up, visit: www.efna.net/elearning


Ensuring equitable access to treatment, services and support , Nov 2019

MEP Interest Group on Brain, Mind and Pain

Meeting Report

6th November 2019, European Parliament, Brussels

On Wednesday, 6th November the MEP Interest Group on Brain, Mind and Pain opened for the new session of the European Parliament. The event focused on the theme of equitable access to treatment, services and support – one of the three themes the group will visit annually over the next five years.

Attendees were welcomed by Joke Jaarsma, European Federation of Neurological Associations (EFNA), and Deirdre Ryan, Pain Alliance Europe (PAE) – the group’s coordinating organisations.

Theses opening addresses presented participants with further details on the thematic focus areas for the Interest Group in the coming years. Ms Jaarsma spoke of ‘Promoting patient empowerment for increased involvement and engagement’ and Ms Ryan spoke of ‘Eradicating stigma, isolation and discrimination’ – presenting results from PAE’s recent survey on this topic, which can be accessed here.

Jaroslaw Duda MEP (EPP, Poland)

Following this introduction, two of the group’s MEP co-chairs addressed the audience: Tilly Metz MEP (Greens, Luxembourg) and Jaroslaw Duda MEP (EPP, Poland). They both stressed their personal and professional interest in this topic – and referenced figures which highlight why these disease areas are such a cause for concern. MEP Duda reference a recent study which estimated neurological disorders to be the world’s largest cause of disability in 2015 and the second largest cause of global death. He also spoke of how 179 million people in Europe live with a brain disorder, and an additional 150 million with chronic pain. MEP Metz acknowledged that member states retain large competencies in the area of health, but she stressed that EU action can provide much added value.

Tilly Metz MEP (Greens, Luxembourg)

After these initial introductions, the discussions moved onto the meeting’s theme of ‘Ensuring Equitable Access to Treatment, Services and Support’.

Opening presentations on European disparities in access to neurological and pain treatment were from Neil Betteridge, European Alliance for Patient Access (EAFPA) and Donna Walsh, EFNA. Both explained how access issues are increasingly focused on appropriate services, as well as access to innovative but expensive therapies. The issues raised in these opening presentations focused on topics such as increasing disease awareness/fighting stigma, addressing barriers to diagnostics, investing in primary care, providing access to multi-disciplinary, integrated care, focussing on adherence, acknowledging the importance of social care and social services/supports, moving from disease centred to person centred care, etc.  [The EAFPA presentation can be found here]

As an example of the complex access needs facing Europeans, the meeting featured a case study on multiple sclerosis (MS) which was opened by Pedro Carrascal, European Multiple Sclerosis Platform (EMSP). Mr Carrascal presented the preliminary findings of the RETHINKING MS project, by the European Brain Council (EBC) and The Health Policy Partnership (HPP). This multi-year research project found that unmet needs in care for people with MS can be broadly organised around three central themes: timely diagnosis and personalised treatment, interdisciplinary and coordinated care, and adaptable support in daily life. Accordingly, MS could be considered as a model for the challenges in providing care for many other chronic neurodegenerative diseases.

As an example, Mr Carrascal focused on one of the proposed policy priorities from the report: revising disability assessments to recognise the complexity of MS. Drawing on his experiences as Director of Multiple Sclerosis Spain and citing findings of the RETHINKING MS in Spain country profile, Mr Carrascal discussed the importance of providing people with MS with social support from the point of diagnosis. Current disability assessments do not reflect the unpredictability and variability of symptoms in MS, in particular those that are ‘invisible’ such as fatigue and chronic pain. As a result, too many people are unable to access the social support that they need. Mr Carrascal closed with a reminder that MS does not live in isolation: there is great value in taking a wider view and approach to ensuring adequate access to health and social care for all chronic neurological disorders.

Following this, Professor Per Sorensen, Danish Multiple Sclerosis Center presented on The MS Care Unit, an ideal model of care for MS and other chronic, neurological conditions. Professor Sorensen cited dramatic improvements in stroke treatment following the establishment of stroke units as evidence that this model is worth pursuing. As treatment and symptomatic therapies have become more complex, the need to access specialised, interdisciplinary support has become more urgent than ever. Yet, access to quality of health care for MS varies considerably according to European nations, regions and settings. Professor Sorensen shared an adaptable model of care fit for a lifelong chronic illness, where the patient is at the centre of an interdisciplinary team composed of an MS-specialist neurologist, an MS-specialist nurse, and other specialists depending on the needs of the individual. MS Care Units will likely optimise the management of MS and improve patient satisfaction. But they may even be cost-effective for society, as they will help to maintain the quality of life, independence and working ability of people living with MS.

Next, Professor Jenny Freeman, Rehabilitation in Multiple Sclerosis (RIMS) and University of Plymouth, presented the value of personalised rehabilitation in MS. Professor Freeman explained that rehabilitation has a critical place in the management of chronic neurodegenerative illnesses like MS. Using two compelling case studies, Professor Freeman showed that even relatively inexpensive and short-term interventions can have life-changing impact on a person with MS. Such approaches may improve mobility, or even allow them to return to work. Professor Freeman explained that many people with MS risk falling through the gaps in care due to large variations in access to therapies, rehabilitation, and practical and emotional support. She emphasised that the current situation of inadequate access to MS care is unacceptable, and urged that we rethink how MS care is organised in order to provide suitable care and support to all people with MS.
[The presentation of the RETHINKING MS project can be found here. Associated policy documents can be accessed here: https://www.braincouncil.eu/RethinkingMS/]

Following these presentations on the MS case study, a moderated discussion was opened by Frederic Destrebeq, EBC.

He started the discussion with Professor Mario Battaglia, President of the Italian Association of MS [AISM] and expert for the RETHINKING MS project who emphasized the importance of the development of integrated health and social care pathways for persons with MS in Italy. At this time, care pathways for MS have already been approved by 13 regional health authorities and are pending approval in 4 other regions. The goal would be to extend them to the entire country. Professor Battaglia indicated that it is important that neurological disorders, like MS, are seen as chronic conditions so that they can feature in national plans or EU initiatives on chronic disorders.

Valentina Polylas, Director of the European Regional and Local Health Authorities provided her insights on how the cohesion funds have and could, in future, be used to support actions in improving access to healthcare and reducing health inequalities. She also emphasized the role of the regions within Member States in facilitating better access to integrated care and support services, illustrating this by a case study in Wales on primary care.

Moira Tzitzika, MS Psychologist in Greece and expert for the RETHINKING MS project indicated that in many countries, people with MS are predominantly treated in smaller clinics in the community, resulting in variable access to a full interdisciplinary team. There are geographical and financial inequalities that can affect access to specialist services and facilities. Psychological support is particularly challenging to access and are typically not tailored to the needs of MS patients. This is also the case for many other neurological and chronic pain conditions, where access can be determined by location within countries. This again highlighted the need for decentralising services, focussing on primary care and exploring new and more innovative approaches.

Dr Brona Fullen, President Elect, European Pain Federation, presented her organisation and the work that it does to educate pain specialists and other health professionals in chronic pain. The role of such medical societies is crucial in ensuring that there is a skilled health workforce available to provide patients with access to multi/inter-disciplinary specialists who can adequately diagnose, treat and support them in managing their conditions. She also spoke about how medical societies such as EFIC are leading advocacy efforts, in partnership with patient, to ensure policy and decision makers across Europe are aware of the prevalence, impact and burden of disease e.g. Societal Impact of Pain platform.

Dr Stanimir Hasardzhiev, Secretary-General, Patient Access Partnership [PACT] introduced this initiative. He emphasis that although consensus building on key issues is important, it’s now time for action. He mentioned several opportunities, including building on the conclusions of the Finnish EU Presidency around the ‘economy of wellbeing’ – around which there are discussions taking place to build an Intergroup on this topic. He encouraged the group to collect and promote examples of best practice – putting forward a case for how this could be upscaled and applied in other areas. He also stressed the importance of the EU’s digital agenda and urged the group to explore digital solutions.

Sylvain Giraud, Head of Unit, DG SANTE B1, Health Systems, at the European Commission was the last discussant. Sylvain Giraud highlighted that the organisation of care, health financing and welfare are competences that are owned by EU member states however the European Commission is providing added value in coordinating programmes of support and monitoring for health systems. For instance, the “State of health in the EU” that will be released end of November provides statistics and state of play based on well defined indicators not only related to performance but also access indicators. It is important to have relevant data for monitoring health systems as countries are going through reforms. This is also particularly challenging as health systems are not uniform across countries. Access to care is a right (universal access to care), however there are multiple unmet needs for instance inequal access to healthcare. Sylvain Giraud provided a clear overview on the forthcoming priorities under the new Health Commissioner’s mandate (access to affordable medicines, the implementation of the social rights strategy 2020-2030, etc.). He encouraged the group to use these are entry point but also emphasised that more advocacy must be done at Member State level, with countries pushing the Commission to take action.

Tilly Metz MEP closed the session by summarising the speakers input and calling for attendees to take these ideas forward in order to address the complex needs of people with neurological conditions in Europe. The group will now consider next steps based on the recommendations arising.


Fighting Discrimination at Work for those affected by neurological disorders and chronic pain conditions

Fighting Discrimination at Work for those affected by neurological disorders and chronic pain conditions


March 6th 2019, Room JAN 6Q2, European Parliament, Brussels
16.00 – 18.00hrs


Meeting report

Joke Jaarsma, President, European Federation of Neurological Associations briefly introduced EFNA. She then informed everyone that the MEP Interest Group will continue its work after the EU elections and will focus on three themes:

  • Fighting stigma, isolation and discrimination
  • Ensuring equitable access to treatment, services and supports
  • Promoting patient empowerment for increased involvement and engagement

This will build on the work that the neurological and chronic pain community have undertaken over the previous five years.

Jaarsma explained that the focus of the meeting is on fighting discrimination at work. She stressed that the level of stigma associated with brain, mind and pain disorders is very serious and can influence employment opportunities, which is why stigma and isolation seriously affect work. She added that a large percentage of the costs of these disorders can be attributed to the loss of employment and associated social welfare costs – as well as absenteeism and presenteeism of those affected and/or their informal carers. It is important to understand that by keeping people at work longer, we can reduce the economic impact – but also improve the quality of life of those affected.

In this regard, EU policy can help to put structures in place to ensure that our employers and our workplaces are better equipped to recruit, retain or reintegrate people affected by neurological disorders and chronic pain conditions.

She then handed over to the host MEP, Jeroen Lenaers who she congratulated on recently receiving the EFNA Neurology Advocacy Award for Young Policy-Maker.

Lenaers started by recalling a pain box campaign from several years ago, where he could experience first-hand the physical sensation of chronic pain. It made him more interested in this field. He added that from his personal standpoint, stigma was one of the most interesting issues, especially when it comes to the workplace. He noticed the double disadvantage that occurs for people suffering from, not just disease, but also the associated stigma.

He reminded us that EC President Junker said that Europe should not just have a financial AAA rank, but also a social one. He added that this MEP Interest Group was successful, to date, because many politicians have not just come to talk, but to listen to the experts, including – most importantly – the patients, and then pushing for action. Therefore, he stressed his liking that the group would continue during the next mandate and build on this success.

The subsequent speakers focused on the impact of Brain, Mind and Pain Disorders on Employment.


Elena Ruiz de la Torre

Migraine as a first case study was discussed by Elena Ruiz de la Torre, Executive Director of European Migraine and Headache Alliance [EHMA] who started by introducing her organisation. She then explained that migraine is not merely a stronger headache but it is a real bio-neurological disease that affects some 160 million adults across Europe. It is also the second cause of years lived with disability world-wide. 2-7 working days are estimated to be lost from work by those with non-severe migraine annually. However, for those with chronic migraine, the number is much higher: up to 46 work days per year! Therefore, it has a huge impact on the professional and personal lives of those affected. It was noted that migraine is twice as common in women than in men, and is often most impactful during the most productive years of life.

Ruiz de la Torre also discussed the Migraine at Work survey that was conducted in collaboration with the Spanish Occupational Practitioners Society. Over 3300 responses were received from employees with migraine from 8 EU countries. Key recommendations included adapting working arrangements; with measures such as flexible time, rest areas and teleworking. 85% of participants consider that a job facilitates social integration.

The speaker finished by discussing how EMHA could support EFNA’s initiatives as well as informing about EMHA plans to create an interest group on migraine in the EP. One of the issues that the group would tackle is migraine and woman.

More details can be found in the corresponding presentation.

Joop van Griensven

Joop van Griensven, President of Pain Alliance Europe followed by talking about Chronic Pain and the survey that they conducted in 2018. One of its most surprising outcomes demonstrated that public administration had one of the highest proportion of chronic pain patients, i.e. about 50%. Also more than 50% people reported that their condition prevented them from performing their work. Other topics dealt with issues such as drop of income which might be affected by stigma, an issue that deserves much more discussion and solutions.

He concluded by declaring that PAE together with EFNA will continue to ask questions and help seek solutions for this major societal problem.

More details can be found in the corresponding presentation.

Elisabeth Kasilingam

Next speaker, Elisabeth Kasilingam, represented the European Multiple Sclerosis Platform of which she is the Managing Director. EMSP is a pan European NGO engaged in advocacy and awareness raising activities. She observed that the topics discussed at the meeting are very important for people with MS. In the past 10 years, EMSP conducted several editions of its MS barometer highlighting what the gaps and good practices are regarding disease management in Europe. Access to employment and social inclusion is specifically tackled in the barometer.

She said there is a clear need for further education of employers. And, she stressed, it is important to align the health and social policies in the Member States. There is already much legislation but there is not enough alignment and implementation. This gap makes the life of people affected by MS more difficult.

In 2015 the largest study with people affected by MS was conducted by Prof. G. Kobelt – “New insights into the burden and costs of MS in Europe”. It was observed that the work capacity of affected individuals declined from 82% to 8% in the years following diagnosis. Work hours, sick leave and productivity while working was measured in the study. The results confirm the importance of early intervention to change the disease course. It also supports the call for incorporating management of symptoms such as fatigue and cognition into routine clinical practice.

Kasilingam stressed that it is clear that working together is the key. To this end a toolkit was prepared along with other documents and guidelines to support various aspects of MS management. Currently EMSP is working on promoting these various tools.

Coming to conclusions, she reminded the audience that in many countries there is still no official definition of chronic disease and there is no common understanding about the concept of disability. We also need to highlight the reality of poverty, deprivation and social isolation due to being unemployed because of chronic illness.

Finally, patients should be trained and empowered to take a more meaningful role in the decision making process. Financial support for national patient organisations is needed to provide capacity building training for patients, so that people with the chronic illnesses are present at decision-making level.

More details can be found in the corresponding presentation.

Francesca Centola, Project Officer at Eurocarers took over. Eurocarers is the European network of carers’ organisations and research institutes with members in 27 European countries. She explained that an informal carer is any person who provides care – usually unpaid – to someone with a chronic illness, disability or other long lasting health or care need, outside a professional or formal framework. 80% of care is provided by informal carers.

The economic value of informal care in EU is between 50% and 90% of overall formal long term care costs. There is a significant gender gap in terms of the level of involvement with most of the care provided by woman.

She then talked about combining care and paid work. Usually informal carers would prefer to combine care and employment, although this often proves to be challenging. It is also in the interest of companies to allow employees to combine these two as there is a strong business case for it. The cost of inaction is much higher than a cost of intervention.

She then explained how informal carers can be supported. Being a carer should be a matter of choice. For the choice to be genuine, there needs to be the provision of formal long-term care services, of good quality and affordable. In addition to this pre-condition, a set of support measures can be put in place, such as care leave, flexible working arrangements, pension credits for time spent providing unpaid care.

The need to support carers with both access to services and work-life balance measures is gaining momentum at EU level. The European Pillar of Social Rights affirms the right to affordable long-term care services of good quality (Principle 18), as well as the right to suitable leave, flexible working arrangements (Principle 9). The ‘Work-Life Balance’ Directive introduces a care leave of 5 days/year.

She finished by informing participants that Eurocarers has recently launched a European Strategy, which indicates the 10 key actions to implement a carer-friendly policy environment seeking to recognise, support and empower informal carers across Europe in a comprehensive and coherent manner.

More details can be found in the corresponding presentation.



Leaners found the presentations very informative. He said that awareness and empowerment seemed to be resurfacing and clear recommendations were very helpful to receive during presentations. He then wondered if we have some good practices from EU countries, as the EU can be a platform for sharing and disseminating best practice. He also noted that it was valuable to hear the perspective of people directly affected – the patients and the carers.

An issue was raised from an audience regarding applying for jobs with chronic illness. For part time jobs, employers ask why young people want to work part time. Applying for jobs can be scary for young people. Chronically ill people should be seen as people and not patients. Patients should be seen as being valuable additions for organizations. It is not only difficult to be functional at job – getting a job is also challenging and should be addressed.

Another comment was made about many neurological diseases that create deficits that are often not seen. J. van Griensven said that raising awareness and education is key here – people should know what to do as many of them are/will be affected by chronic diseases.

In this regard the role of unions was raised by one of participants and in which way chronically ill patients can fall back on unions. E. Kasilingam said that HR departments were involved in their work but unions should also be considered.

Joke Jaarsma, EFNA President then closed the discussion outlined the recommendations of the MEP Interest Group on this topic set out in the updated Book of Evidence. These are:

  • Supporting EU and national campaigns to work towards adapting social, professional, and consumer environments to help people affected by neurological disorders, minimise their challenges and amplify their strengths
  • Calling for the consistent implementation of the Employment Equality Framework Directive and the European Pillar of Social Rights by member states
  • Supporting the timely implementation of CHRODIS initiatives on at national level by emphasising the economic benefits of reducing stigma and providing employment support for people with chronic conditions
  • Calling on the EU institutions to deliver a revised European Disability Strategy and a European Accessibility Act to deliver benefits for persons with disabilities by removing the barriers within the internal market created by divergent legislation, including barriers to accessing education and the labour market
  • Calling for the EU and its member states to leverage the Youth Employment Initiative as a means of to supporting and funding education, employment, and training, for people with brain, mind, and pain disorders
  • Calling for the EU and its member states to leverage the European Structural and Investment Funds to finance initiatives in the area of inclusive employment, including those with disabilities, and bringing them closer to the labour market

Emmanuelle Grange, Head of Unit, Disability and Inclusion in DG Employment and a keynote speaker was then asked to comment on whether these recommendations were steps in the right direction and how they can they be taken forward.

Ms. Grange answered that the direction is right and political pressure needs to be maintained.

She explained that in the European Commission is in charge of mainstreaming disability in all EU policies. As such her unit coordinates work with other Directorate Generals.

She continued by saying that sickness cannot always be assimilated to disability according to the jurisprudence of the European Court of Justice. Therefore, applying legislation on disability in the field of brain, mind and pain disorders cannot be systematic as there is no EU definition of disability and the recognition of disability by member states differs hugely.

She stressed that awareness raising campaigns are very important. In terms of EU competences, sometimes legislation can be made, but equally Member States competences need to be kept in mind.

She then moved on to talking about a number of relevant EU initiatives in this field:

The Directive has been well transposed by Member States. However, the Commission receives various complaints regarding individual decisions taken by social security systems. Disability complaints are present in this group too. The answer that the EC mostly gives is that unfortunately it cannot deal with it as it is national competences. She informed the audience that a common report is under preparation with DG Justice on the implementation of three non-discrimination directives.

An awareness raising campaign on these three directives will take place in early summer until the second half of 2020. It will be a general campaign dealing with all aspects related to non-discrimination. A specific part of this campaign will deal with disability and reasonable accommodation and will be related to employers. She added that there are often a lot of misunderstandings regarding reasonable accommodation. Therefore, seminars will be organized in Member States and guidelines will be discussed and shared with employers.

Grange remarked that the implementation of the Pillar is one of the big challenges of the coming years. Nonetheless, there is also a strong will of the current EC for the Pillar to be implemented, first by the Member States. She stressed that it’s also a job of civil society to push for it and remind Member States about it.

Grange informed participants that DG EMPL started to assess the current 2010-2020 strategy, which is a long process. While the strategy could always be further improved, it does have positive results already. Public consultations will be run to assess it further. She then asked for an active participation and spreading of the word – it is important to have many replies to show to the EC that this matter matters to the citizens. She added that constructive criticism is welcome too.

A new strategy 2020-2030 will have to be discussed in 2020, taking into account issues such as the Sustainable Development Goals. It is to be seen if more could be done in areas of health and employment.

Grange said that DG EMPL hopes that on 13 March the European Parliament will vote positively in which case the Council could adopt it in April. This would open the doors for its transposition and then implementation in the Member States.

The future programme Invest EU could be also an option to be considered. It brings together, under one roof, the multitude of EU financial instruments currently available to support investment in the EU, making EU funding for investment projects in Europe simpler, more efficient and more flexible.


A question was made from the audience concerning existence of guidelines related to self-employed people who are also discriminated when being ill. E. Grange answered that EC has just adopted recommendations on Social Protection for All including self-employment, ensuring that there is a minimal safety net.

Jaarsma stressed that the patients voice should be loud and clear in all of the plans outlined above. She then handed over to J. van Griensven who concluded by remarking that, on one hand, there were a lot of interesting presentations but on the other, limitations could be observed in areas such as implementation. He added that, nonetheless, it is encouraging because we all work on these issues as patient organizations and policy makers. With the EU elections coming up, he urged everyone to give their vote to people that support our cause. He also found it encouraging to hear DG Employment saying that they are working together as this is the only way to find solutions to problems that span across many policy areas.

He finished by thanking those who made the Interest Group in the past years a success and expressed his hope that participants will help the Group in the next term. He then invited everyone to keep an eye on the release of the updated Book of Evidence and associated policy documents at: www.brainmindpain.eu



Future of Healthcare in Europe – What next for brain, mind & pain?

Future of Healthcare in Europe – What next for brain, mind & pain?


21 November 2018



Donna Walsh, EFNA Executive Director, opened the meeting and welcomed the participants. She have the apologies of MEP Marian Harkin who was unable to attend on the day, and introduced MEP Merja Kyllönen, from Finland, to make the opening remarks. She mentioned that while the Parliament is often dealing with economic issues, it is also important to widen this perspective to a more social one. This being said, we also need more money for research, innovation and new medications.

Donna Walsh then gave an outline of the format for the meeting. She said that the idea was to explore how the policy priorities of the MEP Interest Group for the next mandate – along with those of its partners – could be integrated and aligned with the priorities and focus of the EU Institutions.

She said that after a successful 4 years, the MEP Interest Group would continue – striving to build on its successes to date. However, she said the policy documents of the group would need to be updated to reflect the work to now, the changing political landscape, new policy priorities and upcoming opportunities. She explained that from 2019-2024, the group would explore:

  • Fighting stigma, isolation and discrimination
  • Ensuring equitable access to treatment, services and supports across the EU
  • Empowering patients for meaningful involvement and engagement

More details can be found in the corresponding presentation.

She then introduced the first part of the meeting where three disease areas would be profiled in terms of assessing their policy priorities for the coming years and how these could link to the work of the Interest Group and the associated EU Institutions.

STROKE: Action Plan for Stroke in Europe 2018-2030

Monique Lindhout, Stroke Alliance for Europe [SAFE], briefly introduced her organisations – which was formed in 2004. She emphasized that, although a lot has been already achieved, stroke still remains the leading cause for disability in EU. She presented the four overarching asks for the Action Plan. These are summarised as:

  • Reduction of absolute number of strokes in Europe by 10%
  • Treat at least 90% of all strokes in a stroke unit
  • Have national plans for stroke
  • Implement national public health strategies aimed at reducing risk factors for stroke.

She also presented more specific recommendations, which could be found in the corresponding presentation and associated documents:
– The popular version of the Stroke Action Plan for Europe 2018-2030 (PDF)
The scientific version of this document (PDF)

She finished by asking for support from the EU institutions and member states to help ensure the goals of the stroke action plan be achieved.


CHRONIC PAIN: Societal Impact of Pain, Thematic Network – Presentation of Framing Paper and Call to Action

Anca Pop, Pain Alliance Europe [PAE] then took the floor to lay out key information on the Thematic Network on the Societal Impact of Pain (SIP) hosted by EU Health Policy Platform. She informed participants about the outcomes achieved so far which include:

  • SIP Framing Paper that identified existing policy and advocacy initiatives relevant to tackle the SIP and background to recommendations
  • SIP Joint Statement, i.e. agreed recommendations that address the gaps identified in the Framing Paper
  • SIP infographic – visual and synthetic representation of the Joint Statement for further communication and engagement

Vittoria Carraro, European Pain Federation [EFIC], talked subsequently about identified priorities, i.e.

  • Indicators
  • Employment
  • Research
  • Education

These topics are included in the Joint Statement that the pain community has recently worked on. She then described the next steps, including collaboration with the EC and SIP partners and endorsers to support implementation, further endorsements that will continue to be sought until 25 January 2019, ensuring link with SIP activities at national level, as well as follow up and continuity through the SIP Stakeholder Group on the EU Health Policy Platform. She then invited those who haven’t endorsed the paper yet to consider doing so. More details can be found in the corresponding presentation and in the joint statement on chronic pain.


ALZHEIMER’S DISEASE: Driving the policy agenda to optimise care for people with Alzheimer’s disease in Europe – Launch of White Paper

EFNA’s President Joke Jaarsma outlined the relevant work and next steps for the Alzheimer’s Disease White Paper – which focuses on ethics, rights to dignity and socio-economic impact. Jina Swartz, MSD, provided further details on the Paper and added that while

ageing diseases will affect to some extend our lifespan, they will especially impact on our quality of live. Frederic Destrebecq, European Brain Council [EBC], complemented the talk by highlighting the White Paper’s policy recommendations. These included:

  • Implementation and revision of national dementia plans
  • Implementation of UN Convention on the Rights of Persons with Disabilities (CRPD)
  • Focus on social policy and social care funding
  • Optimisation of HTA frameworks to cater for disease modifying treatments
  • Support for a Brain Mission as part of Horizon Europe to ensure research funds
  • Continued engagement of people affected by AD and their carers in policy/decision making
  • Appointment of High level EC Coordinator for Neurological Disorders

The presentation finished with some calls to MEPs to use their election campaigns to support the recommendations listed above. This could be done by meeting with national AD groups, coordinating with colleagues, writing to party spokesperson on health, engaging with EC, etc.

More details can be found in the corresponding presentation (PDF) and the White Paper (PDF).



After the presentations, the discussion was introduced by the moderator Kaisa Immonen from the European Patients’ Forum (EPF). She started by talking about EPFs actions related to the EU elections which will focus cross-cutting themes such as patient empowerment, a

ccess, digital health, research and good health policy. The Elections Manifesto is available here.
She emphasized that health should be a top priority for the EU, and that the European Parliament (EP) should hold the Commission accountable for their relevant actions. This is an area of action for the MEP Interest Group moving forward. She then invited panel members to provide their comments.

Ortwin Schulte, Health Attaché, German Permanent Representation to the EU, provided the perspective of Germany which is generally in favour of keeping the appropriate national autonomy for health systems, therefore reflecting a cautious approach when it comes to EU actions in public health. He reminded the audience that Council Presidencies can select topics for prioritization and, while the civil society can have some influence over this process, the actual priority selection is often a personal decision of relevant Ministers. German EU Presidency 2020 task is already active since 5 months ago. The Interest Group should bear these long lead-in times and windows of opportunity for influence in mind.

Tilly Metz, MEP and President of the Multiple Sclerosis Association of Luxembourg started by excusing her MEP colleague Mady Delvaux who had to leave the meeting earlier. She then went on to say that she would like to find out if her country already has a national stroke plan. She agreed with earlier comments that we have to work more on research but also the social impact of this research. She stressed that it is important to work together, with a long term perspective and a holistic approach.

Merja Kyllönen MEP added that it is clear that we have huge challenges in the future when it comes to ageing. She thought that a wider cooperation is needed to give more space to those health issues. A European Year of Welfare and Better Health for Citizens could be envisaged and she will ask this of Council. She also hoped that the next EC will be more vocal about health.

Poppy Ellis Logan representing Attention UK, a non-profit organisation for those affected by ADHD, made a point about the importance of education. She noticed that during several presentations standardised education for all health providers was discussed, with reducing variability across countries in mind. A prevailing notion in education is that ADHD is not a real condition. With this in mind, we need interventions not just for health care providers, but equally for education providers. She then talked about eradicating stigma and how the media can help with this. Indeed, media play a massive part in ADHD awareness and some guidelines should be used. Similarly, this could be applied for other brain, mind, pain disorders to ensure that misinformation and misinterpretation about that condition no longer continues to happen. This could feed in to the work planned by the Interest Group on stigma from 2019.

Viorica Cursaru, Pain Alliance Europe (PAE) Board member from Romania, emphasized that health in Europe is by far one of the most important issues. She supported the idea of nominating a Vice-President for Health to the EC and then added that we should be advocating for nomination of the patient representative within the EC, who would be placed there permanently to advise on all/any health-related discussions.

Kaisa Immonen remarked that the EC wants to advise member states on good practices. Anyone can submit a good practice on the EC portal, including NGOs. She encouraged those knowing of a good practice to submit it and the EC, after reviewing it, can suggest it to EU countries.

Liisa Jutila, a Finnish member of PAE, suggested that we advertise what we do so that everyone sees it in national media, building on earlier discussions. It could be targeting politicians but, given that politicians change, even more so it would be aimed at society at wide.

Wolfgang Oertel, Vice President of the EBC talked about the Scientific Panel for Health of which he is a member. SPH consists of 27 experts who identify challenges in health research. After four years of work they identified the lack of institutions for health research as one of key bottlenecks. Health is a national issue but health research is a European issue. A suggested European Council of Health Research would include the voice of patients.

Elisabetta Vaudano from the Innovative Medicines Initiative (IMI) explained that IMI promotes projects that could deliver data and evidence-based information that can be then used by politicians. She emphasized that a more evidence-based approach to policy-making is needed. She then continued by saying that in IMI patients often work side by side with researches. With time it became clear to everyone that the quality of research produced at the end of the day is much better while keeping patients meaningfully involved. She concluded by saying that the speciality in IMI is to get various perspectives together; not just experts in science but also in data, ethics, legal and regulatory affairs.

Jacobo Santamarta Barral, representing patients with MS, added that mental health issue is important and explained further how patients have to deal not just with stigma from outside, but also from inside – incl. how they can deal with the diagnosis themselves. They have to acknowledge how to deal with their new situation.

Joop van Griensven, President of PAE, wrapped up the meeting by emphasizing that information has to come from individual patients and national patient organizations. It has to be heard at the national level. Young advocates are the future and they are the people who have to provide this information. He stressed that if we don’t do it, no one else will. As a final remark he pointed out how everything is connected – if we do something on stigma, then we do something on education, then on research, etc. He then thanked everyone for attending and adjourned the meeting.



Optimising Patient Relevant Outcome Measures for sustainable healthcare systems and strong economies

Optimising Patient Relevant Outcome Measures for sustainable healthcare systems and strong economies


20 June 2018

The meeting was opened by host MEP Danuta Jazlowiecka.

Cathalijne van Doorne and Joop van Griensven set the scene.

MEP Danuta Jazlowiecka

MEP Danuta Jazlowiecka

Cathalijne van Doorne, Euro Ataxia

Cathalijne, a person affected by ataxia, gave some examples of how what matters most to patients is not always the same as what matters most to researchers. She spoke about how the distance walked was used as an outcome measure when testing the effectiveness of an ataxia treatment. However, she said, that patients are more concerned with the ability to talk. She explained: “I did a survey on the most burdensome symptoms. Not being able to speak clearly is the most burdensome symptom. Not being able to communicate with your family and friends.”

Joop, a person living with fibromyalgia, spoke about how overall functionality and the ability to stay at work was hugely important to those affected by chronic pain. He spoke about how being unable to work impacted on quality of life, including decreased income and increased isolation. He said the EU could play a role by ensuring the European Social Pillar and the European Semester were optimised so that those living with brain, mind and pain disorders were retained, rehabilitated and/or reintegrated into the workplace – if desired.
The results of a survey by Pain Alliance Europe on this topic will be available soon.

Left: Laure Delbecque. Right: Donna Walsh

After these opening presentations, the first keynote speaker was then introduced: Laure Delbecque, Associate Director, Patient Reported Outcomes, Pharmerit International. She spoke about the role that policy-makers could play in ensuring that Patient Relevant Outcomes Measures [PROMs] are used to better understand and assess patient experience. She said that the regulators and, an increasing number of, payors were prepared to use PROMs. However, she encouraged policy-makers to think beyond clinical trials, and to support the use of PROMs via exit interviews, qualitative research, wearables, preference studies, etc.

The moderator, Donna Walsh – EFNA Executive Director, then asked the panel to contribute their thoughts on how PROMs could be better integrated into R&D, but more specifically in policy and decision-making.

Kaisa Immonen, Director of Policy at the European Patients’ Forum said she preferred to speak about Patient Preferred Outcomes. She said groups like ICHOM and the OECD were committed to working on this topic – but emphasised that high level leadership was required to translate recommendations to actions. She called for obligatory consultation with patients bringing a diverse perspective.

The next panelist was Christopher Bidad, Senior Director, Regional Health and Value Lead, Patient and Health Impact at Pfizer Inc. He said that industry was working more on collecting Patient Relevant Outcomes Measures, which was being enabled by improvements in technology. He called on the EU to further support the development of such technologies and the usage of the results generated. However, he called on the regulators and payors to broaden the scope of the accepted evidence, to encourage industry to continue to collect this data. A clear path forward is required, he said, and incentives could be considered to encourage the collection and use of these outcomes.

Vinciane Quoidbach, Research Project Manager at the European Brain Council, spoke about their Value of Treatment project and its innovative approach in mapping the patient journey and identifying the treatment gaps throughout the care pathway. She said it was clear that treating patients in their preferred way, would lead to decreases in both cost and burden of disease.

Ruth Zaslansky

Ruth Zaslansky

The final speaker on the panel, Ruth Zaslansky of the Pain-Out project, spoke about how collected patient report outcomes, on the treatment of post-operative pain, allowed for the building of extensive data registries which improved clinical decision making. This real-world data could be used for policy making and decision-making, and she called on the EU to support further projects in this field.

Donna Walsh wrapped up the panel by saying there was lot of food for thought which the group could take further in subsequent meetings and via their ongoing, related initiatives.

Left to right: Anna Graca, Sam Kyman and Joke Jaarsma

The second panel was moderated by Sam Kynman of the European Pain Federation.

He introduced keynote speaker: Anna Graca of the European Commission, who presented the draft framework of the HorizonEurope funding framework.

She emphasised that there would be a new approach to partnership and called for patient organisations to be proactive in positioning themselves as key partners in project consortia. She also said there would be an ‘inventory’ of current partnerships conducted and asked all stakeholders to contribute to this task.

She emphasised the new mechanism of Missions. These missions, she said, will relate the EU’s research and innovation to society and citizens’ needs, with strong visibility and impact. She mentioned that a proposed ‘brain’ mission had already been produced by the European Brain Council, and that a similar document had been received from the epilepsy community. She said the Commission expect to be bombarded by these suggested missions.

She mentioned that the strategic planning to prepare first work programmes under Horizon Europe, including co-design of missions and setting up of partnerships, would take place in the second half of 2018 and throughout 2019 – and she encouraged the brain, mind and pain community to get involved.

Joke Jaarsma, EFNA President replied to this presentation. She said:

  • We welcome the improvements suggested in the “Horizon Europe” proposal, including increased funding, but we believe that this is not enough to meet global challenges, as well as to address the historically low success rate that is currently seen in Horizon 2020 – particularly in the field of brain, mind and pain disorders.
  • We would like to see a new budget of at least 120 billion euro to meet the ambitions formulated in the FP9 proposal.
  • We are concerned about the provisional budget of 7.7 billion euro allocated to the “Health” cluster under Pillar II. We believe that adopting the proposal as it stands will be insufficient to effectively address the societal challenges associated with healthcare in the field of brain, mind and pain disorders.
  • We are encouraged by the increased budget for the European Social Fund [ESF+]. However, this is to be spread across a wider range of activities – and we need to ensure that actions in the area of health are supported and the instrument promoted at member state level for this purpose.
  • We realise that health remains a national competence but we would like to see ongoing and increased support for health-related actions where cross border cooperation brings added value e.g. work in the area of chronic diseases, HTA, etc. This should be reflected in the proposal.
  • We call for a mission on Brain

In reply, Anna Graca explained that the budget increase was already very substantial as the UK was leaving the EU and so their contribution was no longer included. So, an increase in the overall budget would be difficult – but perhaps it could be reallocated/reprioritised. She also suggested that less siloed thinking should be pursued.

The next panelist was Madga Chelbus of EFPIA. She mentioned the IMI’s model of patient participation as a framework which could be replicated for other EU funded projects. She specifically mentioned two IMI projects which were working to create improved processes for patient involvement in R&D, but also in broader policy and decision- making:

The final panelist was Mark Fladrich, CCO of Grunenthal who spoke about Grunenthal’s support for the Brain, Mind and Pain Patient-Centred Innovation Grant.

The grant aims to create an environment where patient centricity is the basis for future initiatives. This will implicitly contribute towards creating a sense of innovation, with direct impact on patients’ needs, and towards increasing awareness of chronic pain conditions and neurological disorders.

The awardees of the grant were announced over a lunch which followed the meeting.
Find out more here.


‘How can the EU: #MakeWorkWork  for young people affected by brain, mind and pain conditions?’

‘How can the EU: #MakeWorkWork for young people affected by brain, mind and pain conditions?’


21 February 2018

Marian Harkin MEP opened the meeting by telling participants that, over the last century, the primary burden of disease in children and young people has shifted from infectious diseases towards chronic conditions.

She said the good news was that medical care has advanced so that most young people in chronic ill-health are surviving to become adults. However, many young people living with chronic pain or a neurological condition still struggle to meet some of the challenges of becoming independent adults in modern society. And finding a job is especially challenging in times when youth unemployment across Europe is so high.

She referenced the Written Declaration she launched with the Interest Group in 2016 and said, that although this was not passed, the asks therein would continue to be taken forward.

See more here: http://www.brainmindpain.eu/written-declaration-access-to-employment/

Jacobo Santamarta Barral

Jacobo Santamarta Barral

She then handed over to the first two speakers who spoke about their personal experience of being diagnosed with a neurological and chronic pain disorder, respectively, and the impact this had on their ability to work.

Both speakers spoke about how the invisible nature of their diseases made it even more difficult for employers and colleagues to understand the challenges faced. In MS, for example, 80% stop working within 15 years of diagnosis.

They also spoke about the value of patient organisations in supporting young people diagnosed with such chronic conditions, with Jacobo Santamarta Barral presenting the work of the European Multiple Sclerosis Platform on the topic. He mentioned their projects – such as: Ready to Work, Paving the Path to Participation, Believe and Achieve and so on.
See more here: http://www.emsp.org/projects/

Peter Boyd of Young PARE (People living with Arthritis and Rheumatism in Europe), spoke about the economic impact: ‘Last year’s (10 year record high) EU GDP growth of 2.4% was almost entirely wiped out by the 2% lost EVERY YEAR through Musculoskeletal disorders.’

Peter Boyd

Peter Boyd

He called on the EU to create employment schemes, which are seen as long-term investments and not short-term costs. And, at a national level, he asked that current structures which disincentive return to work – often due to loss of benefits – be overhauled.

The full testimonies of Peter and Jacobo can be found here.

These powerful opening presentations were followed by a discussion – chaired by EFNA Executive Director, Donna Walsh – where three panelists were asked to make three recommendations to the EU Institutions on how the situation can be improved.


Marijeta Mojašević

Marijeta Mojašević

Marijeta Mojašević, Member of the Youth Board at the European Network of Independent Living – Youth said that the EU should:

  • Work on raising awareness amongst employers about nature of neurological disorders and the needs for those affected in the workplace.
  • Encourage employers to meet these needs through reasonable accommodations in the workplace.
  • Widely share best practice from member state on accommodating young people affected by chronic conditions in the workplace – including campaigns targeting wider society.
Yolita Pavlova, EPF Youth Group

Yolita Pavlova

Yolita Pavlova of the European Patients’ Forum – Youth Group asked that the EU recognise that:

  • Young patients are young people.
  • Reasonable adjustments in the work environment can support young patients with chronic conditions to improve their efficiency. These could be locating a work station near the toilets, providing a quiet room or home office possibilities.
  • All young people with chronic conditions deserve a chance to prove themselves as productive employees.

She also mentioned the important of ensuring that young people were supported to disclose their illness, with assurances that this would not affect their chances of gaining or retaining employment.

Hans van de Velde of European Brain @ Work [EBW] spoke about how this initiative is focussed on the 10% of the European population who have a ‘special brain’ that can cause problems in accessing good work – including those with autism, dyslexia, giftedness, etc. EBW facilitates a network of ambassadors who provide information to companies, educational institutions and other stakeholders in the field of work. They can point out possibilities to the employer and the employee and offer a helping hand in choosing support. This initiative was supported by a grant from the EU’s Erasmus+. He called for:

  • Further EU funding to support such initiatives, but also the simplification of the application process.
  • An extension of the approach to working with partnership. He said the EU must work with those affected on creating solutions.

This was followed by contributions from two further MEPs: Jana Zitnanska and Rory Palmer.


Jana Zitnanska MEP

MEP Zitnanska explained that she is the rapporteur on a new report entitled: Pathways for the Reintegration of those recovering from injury and illness into quality employment.

She said that she would be presenting the draft report at the Parliament’s Employment and Social Affairs committee the next day, and asked the MEP Interest Group to feedback on its content.

She mentioned that as well as reintegration, the report would also look at prevention and early intervention.

She said that she would ensure the sharing of best practices was included, but made it clear that support from the Member States would be required to ensure that the report could be leveraged and optimised.


Rory Palmer MEP

MEP Rory Palmer, then said he was also open to ensuring feedback from the Interest Group was factored into the discussion of the report – in his role as shadow rapporteur.

He also added some additional suggestions to the discussion, including:

  • Focusing on providing tools for SMEs to better support young workers with chronic conditions.
  • Providing support for people living with disabilities to run for elected office and providing them with opportunity to raise the challenges faced directly.
  • He also spoke about a new initiative which he is coordinating – a focus group on Dying to Work, which was hoping to create legislation to protect the employment status of those with a terminal illness

Marian Harkin MEP added some additional suggestions to the discussions including:

  • Optimising the EU Social Funds and EU Structural Funds to support employers in creating more inclusive workplaces, and opportunities for young people with chronic conditions.
  • Using the European Semester process to make recommendations to Member States re. the economic benefits of providing employment supports to young people with chronic conditions.
  • Exploring the legislation contained within the European Social Pillar and ensuring that this is implemented by the Member States – including opportunities in the areas of work-life balance (carers leave). Neil Betteridge of the Global Alliance for Patient Access also spoke about how there should be a discussion on disability leave (not just sickness leave).
  • Ensuring the European Parliament takes a lead in employing people with disabilities/chronic conditions.

The floor was then opened and a number of contributions made – including input from Benedicte Faure of the European Chronic Disease Alliance, who presented the recently developed Call to Action to enhance labour opportunities for people with chronic diseases.

She said this document included recommendations based around four key pillars: Prevention and Early Detection, Improving Integration of Care, Favourable Environments and Training of Employers. See more at: http://www.alliancechronicdiseases.org/fileadmin/user_upload/Final_Call_to_action_on_the_employment_of_people_with_CDs_20th_Feb_2018.pdf

Joop van Griensven, President of Pain Alliance Europe, said that the EU Health Policy Platform could be further optimised to share best practice and other solutions, and encouraged the Interest Group to be active there.

Donna Walsh said that this could be taken forward via Chrodis+, the second EU joint action of chronic diseases, where EFNA are involved as partners in the work package on employment and chronic disease.

Marian Harkin then welcomed the final speaker of the day: Emmanuelle Grange, Head of Unit, Disability and Inclusion, DG Employment, Social Affairs and Inclusion, European Commission.

(Left: Marian Harkin MEP, Right: Emmanuelle Grange, DG Employment)

(Left: Marian Harkin MEP, Right: Emmanuelle Grange, DG Employment)

Ms Grange informed the group of a number of Commission initiatives, and made some recommendations to the group:

  • The Commission is finalising a call for proposals as part of the European Programme for Social Innovation. This will provide small grants to NGOs which could be used to support work in this space.
  • 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 Member States).
  • More focus needed on securing support for EU initiatives at the national level. She mentioned how a lack of appetite from the Council has scuppered attempts to introduce Directives in this area. This has meant the refusal of reasonable accommodation is not seen as discrimination. Marian Harkin added that the lack of a definition of ‘disability’ allows means implementing legislation can be difficult.
  • She also said the Member States needed to be pushed to use the EU Structural Funds to finance initiatives in the area of inclusive employment. The European Semester process could play a role here.
  • She said the EU disability strategy would be reviewed and encouraged the Interest Group to feed into this consultation.

Marian Harkin closed the meeting by thanking all involved.
Donna Walsh thanked Marian Harkin and her team for their work in preparing and hosting the event, and said the Interest Group will work on a ‘next steps’ work programme to follow up and advance the discussion.

You can view an album of photographs from the event here.

Check back soon to see more!


Ensuring equitable access to high-quality treatment in brain, mind and pain disorders

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Case-Studies from across Europe

Meeting of the MEP Interest Group on Brain, Mind and Pain
22 November 2017; 8.30 am – 10.30 am, Room JAN 6Q1, European Parliament, Brussels


This meeting was hosted by Lieve Wierinck MEP who welcomed attendees on behalf of the MEP Interest Group on Brain, Mind and Pain in partnership with the European Academy of Neurology and the European Pain Federation. She introduced the session by saying the right to health is a basic social right enshrined in The EU’s Charter of Fundamental Rights of the European Union ‘’everyone has the right of access to preventive healthcare and the right to benefit from medical treatment’’ yet it is still not a reality for all of us.

Large health inequalities persist in the EU and many patients do not have access to effective treatment for neurological and pain disorders. Uncontrolled symptoms worsen the personal and economic impact of these disorders, new and better treatments are urgently needed.


Opening Remarks

The first speaker was Professor Guenther Deuschl, President of the European Academy of Neurology (EAN) who spoke about EAN’s role and purpose.

Professor Bart Morlion, President of the European Pain Federation (EPF) Professor Bart Morlion, President of the European Pain Federation (EFIC) was the second speaker. EFIC is made up of chapters of the International Association for the Study of Pain (IASP) with increasing numbers of top doctors specialising in pain management. EFIC healthcare professionals look after over 740 million people in 37 member countries. With a strong focus on ‘education’ EFIC is moving towards greater patient involvement and improved access to treatments. During The European Year against Pain, EFIC had partnered with Pain Alliance Europe to advocate for better access and tackle healthcare inequalities. A key outcome had been establishing an expert group on the Social Impact of Pain (SIP). Fifty participants from all across Europe were reviewing recommendations made in 2017 and aligning objectives for 2018.


CASE STUDIES: A Health Professional Perspective

STROKE: Professor Franz Fazekas summarised the results of a survey by the European Stroke Organisation highlighting stroke as the most common cause of death in Europe with extensive variation according to country. Drawing on the outcomes of an EAN study, the main pillars of treatment to save lives had been the introduction of stroke units across Europe – now numbering 200 – and intravenous treatment for thrombosis. There were significant differences in care standards pan Europe leading to excessive mortality and lost quality of life. Europe- wide political lobbying is needed for more research and equitable treatments. Professional medical societies can help by producing and sharing guidelines.

PARKINSON’S DISEASE: Professor Guenther Deuschl explained the estimated 1.25 million cases across Europe with 303,000 new diagnoses every year. Treatment options are available or under development but not all equally accessible for patients. The EAN Value of Treatment project was addressing this by using case studies to identify treatment and patient journey gaps with economic analysis and recommended solutions. Major issues were late diagnosis, access to medication, including advanced treatments e.g. deep brain stimulation, access to specialist care, need for more research and data on numbers of specialist neurologists and their training.

Professor Christopher Eccleston, University of Bath

Professor Christopher Eccleston, University of Bath

CHRONIC PAIN: Professor Christopher Eccleston directs the centre for pain research at the University of Bath, home to pain and rehabilitation scientists active in the fields of evidence-based pain, e-health, therapy innovation, adolescent and family pain, and individual differences. He reflected on his book ‘European Pain Management’, the first comprehensive publication on the state of pain care and access to treatment across Europe. Professor Bart Morlion then spoke about EFIC’s activities and how they help to improve equitable access to high-quality treatment for patients in Europe.


PANEL DISCUSSION: A Patient Perspective

Chaired by Nicola Bedlington, Director, European Patients’ Forum (EPF).

In her opening remarks Nicola highlighted that chronic pain in all disease areas is debilitating from social, economic and medical perspectives and more research and development is needed. Nicola introduced the vision, work and structure of EPF now representing 74 umbrella organisations and national patient coalitions. EPF is working with member organisations towards universal achievement of Sustainable Development Goals by 2030. It has set up a Patient Access Group to monitor each county’s progress against the Goals. A multi-stakeholder approach to integration at national level with county specific objectives is promoted.

Monika Benson, Executive Director at Dystonia Europe and EFNA Board Member

Monika Benson, Executive Director at Dystonia Europe and EFNA Board Member

Monika Benson, Dystonia Europe explained that dystonia is a neurological disorder and medical term for a range of movement disorders causing muscle spasms and contractions. An estimated half a million people live with dystonia. There is no cure but it can be effectively managed usually by injecting into affected muscles every three months. As long as patients are regularly treated, their quality of life, including employability, is mostly good.

Issues for patients are: inequitable access to treatments – not every country has approved injections; cuts in healthcare costs – in some countries patients pay for treatments themselves with long-term affordability problems; treatment regimes in some countries are prolonged e.g. injections every four months instead of three. Other problems are the waiting times for referrals to a neurologist and late or missed diagnosis. Solutions would include involving more patient advocates in awareness raising and better education for general practitioners to inform earlier diagnosis.

Neil Betteridge, Rheumatic and Musculoskeletal Diseases developed juvenile arthritis when only 4 years old and became a patient advocate sixteen years ago. His personal mission has been to promote the need for medical professionals to become more patient focused. There are over 200 known variants of rheumatic and musculoskeletal diseases ranging from gout to rheumatoid arthritis. There are ongoing equity issues in ensuring access to treatments for all. More advocacy associations were needed to ensure the patient voice and funding for more scientific and social research and more health professionals – clinicians, physiotherapists, psychologists etc.

Astri Arnesen, President of the European Huntington Association

Astri Arnesen, President of the European Huntington Association

Astri Arnesen, Huntington’s disease explained that Huntington’s is a rare neurodegenerative disease with complex symptoms – motor movements, psychiatric and cognitive. Incidence is 7-12 cases per 100,000 people. Often hereditary with a 50% chance of diagnosis if a parent has had it too, the first onset of Huntington’s can be at any age from juvenile to people in their seventies. There is no known cure but helpful treatments are available advised by multidisciplinary teams depending on disease progression at different stages of life. Inequity of access to treatment is a common problem in Europe with the need for greater awareness and more patient associations. The disease brings social stigma and loss of self- esteem with families ashamed that their inherited genes are often the cause. The situation for Huntington Disease patients in some European countries is improving thanks to the work of the European Reference Network. Digital and telemedicine developments are helping but a strategic, structured approach to campaigning for change is essential. Political will and cost efficiency are key with national funding to make a real difference. The Norwegian Government has pledged one million euros pa which has been a good start in helping to raise awareness.

Joop van Griensven, Chronic Pain emphasised the need for high quality treatment dependent on the length of time taken to diagnose a condition and how long a patient has suffered from chronic pain. Wait times for diagnosis and treatment are common issues in Europe and treatments are not matching expectations with only 40% of patients expressing satisfaction in a recent survey. There is an outstanding issue of defining and benchmarking a quality care standard for chronic pain. Meeting attendees were invited to participate in an on line chronic pain survey on the website until 4 December 2017 and to consider volunteering to join the Brain, Pain and Mind’s Expert Patient Group.


THE FUTURE- Will Brexit derail progress?

Elisabetta Zanon, Brexit Health Alliance

Elisabetta Zanon, Brexit Health Alliance

Elisabetta Zanon of the Brexit Health Alliance said that health had been at the centre of the Brexit debate with an extra £350 million per week promised for the NHS by the Leave campaigners. She reminded the audience that cooperation across Europe has resulted in many benefits for patients including reciprocal healthcare; the safety of pharmaceutical and medical devices, blood and organs are regulated by EU.

Many people know that across the EU there was a reciprocal healthcare system for holidaymakers and pensioners. But in future patients could be denied access to best specialised treatment, face cost of private health insurance or have to pay personally for treatment received abroad.

A big concern is that relocation of the European Medicines Agency (EMA) may cause disruption and capacity issues. And future trade barriers and diverging regulatory systems could lead to delays for patients in accessing innovative therapies, some medicines or devices becoming unavailable in some countries plus possible higher costs.

Elisabetta Zanon reminded us that the UK was a leading partner in EU Joint Programme in Neurodegenerative Disease Research and has highest number of pan-European trials for both rare and childhood diseases. She said that policy makers and patient orgnisations should press for health issues to be prioritised in the negotiations.


Rory Palmer MEP

Rory Palmer MEP

Rory Palmer MEP became an MEP in October 2017 after serving for six years as the first deputy city mayor in Leicester. He has always put health and social care at the heart of his public life.

He emphasised the impact Brexit could have on citizens who rely on reciprocal EU healthcare arrangements. Disabled people, the retired and people with multiple conditions could face particular challenges. He stressed the importance of working together to ensure that co-operation continues.

Around 10,000 EU nationals have quit the British NHS since the Brexit referendum, according to the agency that collects data on the health service. Rory called on the UK government to ensure an immigration system that is straightforward and welcoming to health workers and researchers at all levels and their families too.

He said that patients must mobilise for health to be prioritised. As an MEP he will continue to work to secure the best possible outcome for patients, researchers, healthcare workers and citizens across Europe.

Ann Little, President, European Association of Neurological Associations closed the meeting by thanking all speakers, attendees and organisers, with special thanks to Lieve Wierinck for hosting it.

This meeting was an initiative of the European Federation of Neurological Associations [EFNA] and Pain Alliance Europe [PAE], co-chairs MEPs Marian Harkin, Jeroen Lenaers and Daciana Sârbu.

Our aim is 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.

The Value of Early Intervention  in Brain, Mind and Pain Conditions

The Value of Early Intervention in Brain, Mind and Pain Conditions

Meeting of the MEP Interest Group on Brain, Mind and Pain and the Interest Group on Mental Health, Well-being and Brain Disorders – in partnership with the European Brain Council.

July 12th 2017 – European Parliament, Brussels
Host MEPs: Jana Žitňanská / Marian Harkin / Michał Boni / Marek Plura


Jana Zitnanska MEP welcomed participants on behalf of the MEP Interest Group on Brain, Mind and Pain, the Interest Group on Mental health, Well-being and Brain Disorders and the European Brain Council. She underlined the fact that brain, mental health and chronic pain disorders are common, disabling and costly; over one in three European citizens are affected during their lifetime – currently over a 165 million people in Europe. Brain disorders often have no cure and drastically reduce quality of life and ability to participate in society, at school and at work. Up to eight out of ten people living with a brain or mental health disorder remain untreated or inadequately treated although effective treatments exist; brain and mental health disorders are still surrounded by stigma.

This is a challenge for society as a whole; the 2010 European Brain Council study provided a solid estimation of the economic costs of brain disorders in Europe, i.e. close to € 800 billion. This meeting would address a follow-up study by the European Brain Council, i.e. the Value of Treatment research project and White Paper. This explores the value of early intervention.


Session 1

This session intended to address the conclusions and recommendations from the European Brain Council’s Value of Treatment research project and White Paper. It explored the value of early intervention, using case-studies in four disorders – presented from various stakeholder perspectives.

Jana Zitnanska then handed the floor to Paul Arteel (GAMIAN-Europe) to chair the first session. In his introduction, he stated that his organisation welcomed its involvement in the VoT project as many GAMIAN-Europe members find that treatment is either unavailable or inadequate. Research has shown that this ‘treatment gap’ applies to some 50% of those experiencing mental health problems – so obviously, closing this gap is a priority for patients.

It should be borne in mind that treatment of mental health issues is relatively recent compared to treatment of physical health issues – for instance, the first medication (for schizophrenia) was only developed some 60 years ago. Paul Arteel underlined that a holistic approach is required when defining ‘good treatment’ – medication is just one aspect.

The first speaker, Patrice Boyer (EBC) provided a brief overview of the background and key messages of the VoT project. Brain disorders comprise mental as well as neurological disorders; these disorders are highly prevalent as well as very costly as demonstrated by the 2010 EBC study. In most of these cases the cost of the disorder is linked to the cost of ‘non-treatment’ (i.e. absence of treatment, inadequate treatment or delays in the onset of treatment). Ironically, a range of complementary interventions does exist – however these are not always available. To ensure the continuity of care from the very beginning, early identification and intervention for people at risk or patients with a brain disorder is key for optimal disease management and effectuating better clinical outcomes.

A large body of research links early intervention to measurable health gains (e.g. improved survival rates, reduced complications and disability, better quality of life and lower treatment costs); this finding is further demonstrated through the VoT case studies which focused on 9 different areas, i.e. schizophrenia, Alzheimer’s disease, epilepsy, Parkinson’s disease, Multiple Sclerosis, Stroke, Restless Legs Syndrome, headache and Normal Pressure Hydrocephalus. The objective was to identify treatment gaps and causing factors along the pathway, propose solutions to address these and to evaluate the socio-economic impact of these solutions.

Patrice Boyer briefly focused on schizophrenia; this is one of the most severe and disabling mental illnesses. The treatment success rate can be high if early identification of patients at risk, early detection of psychotic symptoms, and early intervention at the prodromal phase are enabled.

The types of intervention can vary depending on the stage of the disorder but they have always to be integrated and coordinated. Mr Boyer also referred to the work on headaches as these affect half the European population, particularly tension-type headache, migraine, and medication-overuse headache. While headaches are treatable they are still significantly under-diagnosed and in many cases patients receive inadequate medications. Education of primary care practitioners and pharmacists can play a key role in increasing diagnosis, proper treatment and appropriate referral to the tertiary level of care, if needed.

The main conclusions of the VoT project relate to the need to focus on risk reduction, education (disseminated in collaboration with associations of patients and families) and the need to rethink and restructure health services.

The project’s main messages are as follows:

  • Cost-effective solutions exist but are not sufficiently developed and implemented;
  • More research on brain disorders is needed to understand the causes but also the progression of brain disorders and to develop new treatments that may modify, i.e. slow down, or even stop their course;
  • There is a need for a healthcare system transformation: seamless, coordinated, and ‘patient-centred’ systems at national, regional and local level are required.

Whenever possible, integration of care in the community is a great asset.


The next speaker, Michal Boni MEP, underlined the importance of today’s discussion in order to promote better knowledge and understanding of brain disorders. He welcomed the VoT project and White Paper and its focus on prevention and early intervention in order to bridge the main diagnosis and treatment gap and underlined the need for MEPs to be part of this multi stakeholder initiative. The VoT project and White Paper help to progress the understanding of the key issues and questions related to integrated care, implementation of what exists and what is required and address the current fragmentation of healthcare provision.

There is a clear need to involve patients and their social environment, from a human as well as a medical perspective. Individuals should be much better informed about brain disorders so that they can recognise symptoms, and thus contribute to early intervention. Risk groups should be identified as the burden of brain disorders needs to be reduced.

In this respect more use could be made of new technologies to support prevention and early intervention. These new technologies have huge potential, also in terms of data generation and analysis, thus supporting better risk assessment. This can also help create services that are personalised and more adapted to individual needs, which is particularly important when it comes to mental health disorders.

From the work of the VoT project it has become clear that health care systems need to be restructured. National brain plans could help in this respect, addressing brain health in a holistic and integrated manner. Best practice exchange is another helpful mechanism and this can be facilitated by the EU level. Many MEPs are supportive of these ideas.


The next four speakers each addressed one of the specific areas addressed by the VoT project.



Dr Alastair Webb (University of Oxford) emphasised that there are 1.3 million new strokes per year, a third of which occurring in persons younger than 65 years of age. Approximately one third of those affected ultimately die as a result; and stroke is the leading cause of acquired disability and a leading cause of dementia. The direct costs of stroke are estimated to be €30 billion with indirect costs likely exceeding € 50 billion. Research has forecast a 34% increase in the total incidence of stroke by 2035, with an increasing incidence in young people (under 55). There are significant gaps in providing known effective treatments for stroke, including primary prevention of atrial fibrillation and hypertension, a lack of Acute Stroke Units and limited rehabilitation.

Early, comprehensive stroke unit based care is critical for effective acute treatment, secondary prevention and early rehabilitation of stroke patients through providing cutting edge acute treatments (clot-blusters and mechanical clot retrieval), optimal investigation, multidisciplinary expertise, early rehabilitation and effective transition to the next stage – and are cost-effective as well.

Although changes to services need to funded and driven at the national level, the EU is vital to develop Europe-wide guidelines and accreditation, increase training in cutting edge techniques and facilitate the exchange of expertise and knowledge between centres, whilst continuing to support stroke research from basic science through to implementing preventative strategies (hypertension, AF detection), optimal acute stroke pathways and rehabilitation.


Multiple Sclerosis (MS):

Vinciane Quoidbach (EBC) informed the audience that in Europe, some 700.000 people live with MS and that the condition is the leading cause of non-traumatic disability worldwide. It is a lifelong burden.

The direct (medical and non-medical) and indirect costs amount to over €15 billion per year. All types of costs increase significantly with increasing levels of disability: from €23,000/case/year for mild MS to €77.000case/year for severe MS. Indirect costs increase as well (productivity losses for sick leave, incapacity to work and early retirement); informal care costs largely falling outside of the health and social care systems also need to be taken into account.

There are delays in detection, diagnosis and (early) treatment (due to lack of access to neurologist, limited access to specific (unaffordable) medicines and restrictive reimbursement policies).

Early diagnosis and treatment is key as the inflammation is most severe in the first years of the disease; early treatment can reduce the conversion of CIS to CDMS (Clinically Definite MS) and is less costly.

In MS, the key paradigm is equal access, early diagnosis and early use of disease-modifying treatments (DMTs) through a personalised medical approach and optimised target treatment.

Disease-modifying treatments (DMTs) at the early stage of relapsing-remitting multiple sclerosis (RRMS), including clinically isolated syndrome (CIS), are available to slow down the progression rate and disability accumulation. In other words, early intervention can reduce the societal burden of MS.


Restless Legs Syndrome (RLS):

L-R: Michael Boni MEP, Patrice Boyer (EBC), Paul Arteel (Gamian), Jana Zitnanska MEP and Joke Jaarsma (European Alliance for Restless Legs Syndrome)

L-R: Michael Boni MEP, Patrice Boyer (EBC), Paul Arteel (Gamian), Jana Zitnanska MEP and Joke Jaarsma (European Alliance for Restless Legs Syndrome)

Joke Jaarsma (European Alliance for Restless Legs Syndrome) explained that Restless Legs Syndrome (RLS) is a neurological disorder characterised by an irresistible urge to move to stop highly uncomfortable burning, itchy sensations. Apart from the legs it can affect the arms, torso, head, and other parts of the body. RLS is the second most expensive in terms of neurological diseases, (inter alia) due to its high prevalence: ~10% overall, 2.7% moderate to severe (i.e. needing treatment). Awareness of RLS is low amongst GP’s, neurologists and other disciplines and there are few specialised neurologists; often, patients see many doctors and wait many years before the diagnosis is made. In addition, late misdiagnosis and late and inappropriate treatment occur frequently. Medication consists of anti-Parkinson drugs (dopamine agonists), anti-epileptics and opioids; a specific medicine drug for RLS has yet to be developed. Dopamine agonists have become the treatment of choice since 2006. However, in many cases these lead to augmentation, with the irresistible urge to move affecting the whole body at every hour of the day. Joke Jaarsma made to following recommendations:

  • Education about RLS is urgently needed to increase expertise of health care professionals;
  • Education is crucial and has to be disseminated in collaboration with patient associations;
  • The search for the cause(s) of RLS and for new treatment strategies has to be intensified in order to reduce the burden on patients and the high cost to society.




Aagje Ieven (EUFAMI) provided the families’ perspectives on early intervention in schizophrenia. While family members are slowly getting more involved in treatment and recovery planning by service providers, their involvement is still insufficient – and this leads to loss in quality of service as well as quality of life; in general, services do not cover the needs of family members.

For almost all family members the first contact with health services starts with a crisis – this is a clear sign that prevention, screening and early intervention are not working.

Aagje Ieven underlined the needs and issues of families, i.e.

  • Accessible, affordable community services, including:
    • Investment in affordable community based mobile services;
    • Availability of a wide range of services combining treatment and/or psychosocial support with physical health care, social and economic support, legal aid etc. through team appointments;
    • Family support organisations are a part of the service landscape and need to be invested in;
    • Community based services for older people with severe mental ill health need to be created.
  • Involvement of and good communications with family members from the first contact with services, in planning for recovery, treatment and care;
  • Parity of investment in mental health, at a level with physical health – including investment in policies and organisations providing support to family carers in mental health to prevent burnout, health problems and economic duress;
  • Mental health prevention in schools, early childcare and primary care services, including mental health in teaching curricula, child carers and primary carers, and presence of psychologists in schools and primary care settings;
  • Preventive programmes for young people moving away from home for the first time, as well as mental health services for young people on the move;
  • Preventive programmes and services for children of parents with mental ill health;
  • Awareness raising to combat stigma.


Closing the session, Marek Plura MEP emphasised the importance of early intervention and diagnose and appropriate, personalised treatment, which will greatly benefit patients. Early intervention can improve the quality of life of patients (and their families); it will give patients a chance to fulfil their potential and lead more active and complete lives (i.e. the personal and social dimension) as well as have a positive effect on the cost of treatment (the economic dimension). The European Parliament cannot address all these issues nor solve all the problems; however, MEPs do have the opportunity to speak with their national counterparts and with other policy makers in their countries and are able to help raise awareness of these important topics. The VoT project is hugely supportive as it has provided (and will provide) evidence-based arguments for further (joint) actions.


Session 2


Aim: This presentation and panel discussion intended to explore possible next steps in the VoT project – exploring the application of the developed methodology to other disease areas.

Session chair Ann Little (President, EFNA) highlighted the objective of the session and gave the floor to Frédéric Destrébecq (EBC), who informed the audience of the next steps of the VoT project (VoT2).

A first draft of a multi-annual plan was submitted to the EBC General Assembly in June, with the aim to present a consolidated proposal at an EBC Strategic Workshop in September and endorsement by the EBC Board in the same month.

All case studies of the VoT focused on early intervention as a key area of the care pathway (addressing research as well as organizational needs for brain disorders) as well as a pre-condition for optimal disease management and achieving better clinical outcomes.

The main VoT findings, as also highlighted by Patrice Boyer, relate to:

  • Low understanding of the diseases aetiology, risk and preventive factors;
  • Lack of disease awareness in the general public and lack of training for health care providers;
  • Lack of primary and secondary prevention programmes;
  • Lack of timely and adequate diagnosis and treatment;
  • Fragmentation of health care services and lack of coordination between health and social services.


This means that more basic, translational and clinical research is needed both to understand the causes and progression of brain disorders as well as develop new treatments. The public health perspective should be included in every way.

VoT2 will address and integrate the unmet needs in new disease areas and the following have already been proposed: depression, chronic pain, anxiety, rare disorders (ataxia, dystonia) and Myalgic Encephalomyelitis (ME).


The next speakers highlighted the unmet needs in three specific conditions that could be addressed by VoT2.



Paola Giunti (University College London) explained that ataxia is a rare disorder, which causes loss of balance with unsteady, irregular, wide-based gait with swaying and risk of falls. Limb movements are irregular and fragmented; there are problems with eye movements and speech is slurred. There are various forms of the condition.

In terms of the ideal patients’ clinical pathway, Paola Giunti outlined the work of the UK’s Ataxia Centres. These are specialised centres which receive patients that are referred by neurologists and GPs. Patients see the same neurologist on every visit, which guarantees continuity of care. Neurogenetic nurses offer support both during and between clinic visits, also to discuss medical, social or financial queries. Physiotherapy, Occupational Therapy and SALT are available too. The Centres have close links with primary, community and secondary care services for shared care and education on the various forms of Ataxia.

Patients prefer Ataxia Centres because of their specific understanding of Ataxia, their confidence in the specialised neurologist, the medical advice on managing symptoms, the precise diagnosis and practical advice about living with Ataxia and information about research – in general, they feel they can cope better because of the support received in these Centres. These clinics also contribute to cutting costs.


Myalgic encephalomyelitis (ME):

Nancy van Hoylandt (European ME Alliance) presented ME as a serious and debilitating disease which involves multiple bodily systems and impairs the ability to function, both cognitively and physically.  The huge burden of this condition is highly underestimated. Between 0,1 and 1% of the population is affected (depending on the used diagnostic criteria). There are unmet needs in terms of:

  • Diagnostics and access to care, starting with the lack of consensus on the diagnostic criteria. Consensus would be highly beneficial to ensure early as well as accurate diagnosis. Ideally, patients should have access to appropriate, patient-centred care in a multi-disciplinary setting with planned follow up. This is crucial for children and adults in various degrees due to the different levels of severity of the disease. However, there is a lack of effective treatments. The current ‘recommended treatments’, Cognitive Behavioural Therapy and Graded Exercise Therapy, can cause further deterioration, increased suffering and worsening of symptoms due to lack of consideration for the limitations of the patients.
  • Education: There is a lack of understanding of the disease and of its severity and consequences. Not only amongst health professionals but also among patients and carers; it is unclear where and how care can be accessed.
  • Children: this is a crucial area as children are vulnerable and need to be protected. In general, their prognosis is better than the prognosis for adults but the condition needs to be recognised and accepted, also by the (school and home) environment. Parents should be able to take care of their children without having to fear for their parental rights. A model for transition from child-centred care to adult oriented care systems should be put in place. Home tuition or on-line learning could provide an opportunity to break through the isolation. The patient’s wishes should be recognised in every aspect of the disease and its treatment.
  • In terms of VoT2 and the preferred patient pathway the focus should preferably be on children as they have additional needs and are generally excluded from clinical trials. This is also an issue for the EU Health and Research programmes.
(L-R: Frédéric Destrébecq (EBC), Ann Little (President, EFNA), Nancy van Hoylandt (European ME Alliance) and Nick Guldemond (Institute of Health Policy & Management Erasmus University Rotterdam)

(L-R: Frédéric Destrébecq (EBC), Ann Little (President, EFNA), Nancy van Hoylandt (European ME Alliance) and Nick Guldemond (Institute of Health Policy & Management Erasmus University Rotterdam)

Nancy van Hoylandt also called for the development of guidelines for schools, social workers, health systems, for education of healthcare providers, creation of a model for transition from child-centred care to adult-orientated health care systems and possibilities for home tuition or on-line learning.


Chronic Pain:

Nick Guldemond (Institute of Health Policy & Management Erasmus University Rotterdam) underlined the major societal impact of chronic pain; 95 million people are living with the condition. The total cost across Europe is estimated to be as high as €300 billion, of which 90% can be attributed to indirect costs such as productivity loss, social security and welfare payments. Chronic pain has a severe impact on the ability to work and career, on quality of life and on relationships. A recent survey conducted by the Pain Alliance Europe confirms the impact of chronic pain on EU citizens. The findings also indicate a treatment gap in EU countries, mainly related to a lack of early diagnosis and timely intervention. A holistic approach, anticipating the needs of patients is scarce.

Pain is a complex phenomenon, as there are cultural, perception and social issues at play as well. Much knowledge has been generated from an academic perspective; we now need to capitalise on this knowledge and turn this into strategies and actions that work in practice. Moreover, we need to broaden the ‘health-only’ policy perspective and focus on employment and other relevant policy areas. The VoT project has demonstrated that we can unite different stakeholders at all levels, linking patients to health care professions and policy levels. Industry has a role to play as well. The EU can support the exchange of good practice in relation to ‘work floor’ based programmes and support communities that can help implement these programmes and feed back to research areas. National governments have a role to play as well and need to look beyond national interest; it is important to scale up what we know as we cannot afford to reinvent the wheel.


The final speaker, Stéphane Hogan (DG Research, European Commission) saluted the interesting results and conclusions of the VoT project, which states the huge need to better address brain conditions. The VoT expertise will help guide policy development in research, as well as in healthcare for brain-related disorders, given its focus on sustainable patient-centred and holistic care.

There is clearly a need for more research to address the gaps identified by the VoT study, especially in relation to early diagnosis and intervention. The Commission is convinced of the need for more research to address those gaps. Other stakeholders, such as the Member States, will also need to be convinced and encouraged to coordinate their research efforts.

There are many knowledge gaps regarding the drivers of these conditions. The Commission has contributed to address these gaps through its support to research in successive Framework Programmes for both translational as well as basic research. Over the years many successful projects addressing brain research have been supported. The current Horizon 2020 programme has a challenge-oriented oriented, bottom-up approach for collaborative research. There are also increasing resources dedicated to basic research via the European Research Council. Stéphane Hogan gave examples of successful projects.

e-Health and new technologies have major potential contributions in this domain. The Commission recently published a mid-tem review of its Digital Single Market Strategy (which comprises a strong health component) and has announced an Action Plan on Digital Transformation of Health Care for the coming autumn. Digital health and related applications will benefit all aspects of healthcare.

Furthermore, the Commission has fostered partnership and coordination in health research; the Innovative Medicines Initiative (IMI) is a public-private partnership with a significant focus on brain-related disorders, while the EU Joint Programme in Neurodegenerative Disease Research (JPND) has enabled more 30 countries to coordinate part of their research efforts in this field. International cooperation beyond Europe is also needed. For instance, for traumatic brain injury, the EC is collaborating with the US and Canada. The Commission intends to continue to encourage and support similar efforts for enhanced collaboration and coordination in brain research through upcoming calls for proposals of Horizon 2020.


Nessa Childers MEP (co-chair of the Interest Group on Mental health, Well-being and Brain Disorders) congratulated EBC on its efforts and underlined that there is a clear need to connect research to people, as many people are suffering (often in silence). She also wondered if research has been done on the intersection between the psyche and the soul.


Brain Hayes MEP (chair of the Interest Group on Epilepsy) has made efforts in recent years to get these issues on the policy agenda, both at EU as well as at national levels. Brain research should be coordinated across the EU; all too often, this area does not get the same level of attention as other health conditions. We have to seek the opportunities to address this area bearing in mind that multi-agency funding is crucial. Mr Hayes congratulated the Commission on its efforts and its collaboration activities in the area of brain research.


Remarks and questions from the audience


  • MDTI was suggested as another area which could be addressed by VoT2.
  • It was suggested that in order to create the critical mass to address certain brain conditions, young researchers and neurologists would need to be brought on board.
  • In many countries navigating the healthcare system can be complex – where can the appropriate care be found? The expertise is there but the problem is how to organise this into a personalised and dynamic way.
  • MEPs and MPs should have more contact with another so that the Member States can be spurred into action. Silos need to be overcome on both sides (EU as well as national level).
  • National Brain Councils can support the dissemination of the VoT findings at national level. EBC will also look into the feasibility of developing country specific studies.


Ann Little closed the meeting, thanking all MEPs, speakers and organisers.



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