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

MEP INTEREST GROUP ON BRAIN, MIND AND PAIN: MEETING 1 2019

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.

 

Discussion

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?

MEETING REPORT

MEP INTEREST GROUP MEETING
21 November 2018

 

Welcome

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).

 

Discussion

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

MEETING REPORT

MEP INTEREST GROUP MEETING
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.

 

HELP TO US #MAKEWORKWORK BY ENABLING ACCESS TO EMPLOYMENT FOR THOSE AFFECTED BY NEUROLOGICAL DISORDERS AND CHRONIC PAIN CONDITIONS

Jacobo Santamarta Barral

When faced with a neuro-degenerative disease the diagnosis may look like the hardest part but it is not. You may feel bad at that moment but, even though you do not know what lies ahead, things are not going to get any better.

Jacobo Santamarta Barral

Jacobo Santamarta Barral

I was 22 years old when I got diagnosed and nothing would have lead me to expect how bad my situation could become. It was not until five years later that I started having some serious symptoms and I realised that they were just the beginning. I had finished a Masters Degree in Law and was ready to start what I believed was going to be an exciting work career.

That relapse kept me from doing anything at all for around a year. This made me understand that those symptoms were something I had to live with while trying to have a normal life- or rather, the life I was supposed to live.

So I got back on track, looking for a job; trying not to let my symptoms interfere with what I had prepared my whole life to do. For more than five years I developed my job the best I could but my situation got worse as time went by and eventually I had to retire. Knowing that I was not going to be able to work anymore was the worst part of all since I felt my life would lose its meaning.

It took me just a couple of months to realize, however, that maybe I was not meant to do what I thought. So I began to get involved into trying to make life easier for those in the same situation as myself; advocating for people who face such a devastating diagnosis.

 


 

Peter Boyd

To the outside world I had it all – a management degree, my own home, a brilliant family, a well-paid job I loved, a good group of friends and a beautiful girl I had just begun to see.

I had even found the strength of character and of mind to do the lonely hours of work to return to playing football after two ruptured cruciate ligaments in my right knee aged 16 and 20. I’d also had 60% of the cartilage in that same knee removed and still played League of Ireland for Dublin City. I had learned to work with and supervise people in 5-star resorts in Scotland and France and pubs in Dublin that held 900 people.

Peter Boyd

Peter Boyd

But, diagnosed with arthritis at 26, I was destroyed.

Depression is the most common comorbidity of MSDs and I live with it every day. When I owned it, it was the 10th diagnosis I had received alongside all the other systemic auto-immune conditions.

Forced to leave employment I became isolated, lost my self-confidence, my self-esteem, my financial security, my girlfriend, my friends and, for a time, hope. For two years I wallowed and grieved for everything I lost, took two years out of my life.

However, with support from my national and European networks I rebuilt myself. I had to retrain for jobs more suitable for a person with an MSD and I enjoyed being back in education. With a greater empathy and understanding of the world around me I became a better person.

I am now a better qualified, more rounded, more employable and better person than ever before. Unfortunately, the employers of Ireland and Europe view the large gap in my CV as a problem rather than the opportunity I’ve taken it to be.

I am ready, willing and capable of working. All I ask is for the opportunity to show that.

 

‘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?’

MEETING REPORT

MEP INTEREST GROUP MEETING
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.

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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.

DSC02416

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


Welcome

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.

CONCLUSIONS AND CLOSE

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.

Brain, Mind and Pain Grant 2018 – Call for Proposals

Brain, Mind and Pain Grant 2018 – Call for Proposals


Bringing the innovation closer to patients, 2 leading organizations – Pain Alliance Europe and Grünenthal – are proud to introduce you to their 1st Brain, Mind, and Pain Patient-Centred Innovation Grant, and announce the official opening of the Call for Proposals and the opening of the application period.

For 2018, the Call for Proposals addresses the Grant theme:

“Overcoming problems in access to treatments”

You are invited to consult the grant documentation and to submit your proposal via the Application Form available online starting 1st September 2017. The deadline for submitting the applications is 31 December 2017.

Please consult the Call for Proposals for all details concerning application rules and eligibility criteria.

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.

 

Stroke:

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.

 

 

Schizophrenia:

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.

 

Ataxia:

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.

Optimising the European Social Pillar to #MakeWorkWork for those affected by Brain, Mind and Pain Conditions

Joint meeting of the MEP Interest Group on Brain, Mind and Pain and the Interest Group on Mental Health, Wellbeing and Brain Disorders, hosted by Marian Harkin MEP.

March 8th, 2017
European Parliament, Brussels

 

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

Marian Harkin MEP (below) welcomed the cooperation of the two Interest Groups – Brain Mind and Pain and Mental Health, Well-being and Brain Disorders – and the three organisations behind these Interest Groups, i.e. EFNA, PAE and GAMIAN-Europe. This cooperation is positive, particularly on a topic as relevant as the European Pillar of Social Rights and the way this could be optimised to make a real difference to the lives of Europeans. Marian Harkin underlined that, in these times marked by anti-European sentiment, the launch of a European Social Pillar is a welcome effort to mainstream social fairness and social protection. She also thanked all those involved with the work on the Written Declaration, which has helped to raise awareness of the issues faced by people affected by pain and neurological conditions with respect to employment. These conditions have a strong impact on quality of life of patients and on their carers.

Dolores Gauci (GAMIAN-Europe) and Marian Harkin MEP

Dolores Gauci (GAMIAN-Europe) and Marian Harkin MEP

Dolores Gauci (GAMIAN-Europe) (left) took over the chair, stating that her organisation warmly welcomes the Commission’s intention to come forward with a comprehensive Pillar of Social Rights. This will guide policies in a number of highly relevant fields which are essential for well-functioning and fair labour markets and welfare systems. It will be very interesting to see what the actual Pillar will look like when the 16.500 online submissions and 200 position papers received as a result of the consultation will have been analysed and incorporated. While it is of course regrettable that mental health in not mentioned explicitly in the preliminary outline of the Pillar, there are many points of entry and opportunities to use as hooks for future advocacy efforts, such as the Articles on healthcare (Article 12) and long term care (Article 17).

It is heartening to see that it is clearly stated that all citizens should have timely access to good quality preventive and curative health care. Also, it is stated that access to quality and affordable long-term care services, including home-based care, provided by adequately qualified professionals shall be ensured – and these provisions obviously apply to those with mental health problems as well. In addition, there are many provisions relating to employment and working conditions – of crucial importance to people living and working with mental health problems.

The Social Pillar will not be binding – that would go against EU competence. However, it will provide a good example and useful guidance to member states and policy makers in charge of social and health policies.

Raquel Cortés Herrera (European Commission, DG EMPL)

Raquel Cortés Herrera (European Commission, DG EMPL)

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

The initiative was announced by President Juncker in his State of the Union address in 2015 and then included in the Commission’s Work Programme (CWP) for 2016. A 9-month public consultation was organised to take stock and gather the views of citizens and stakeholders. This consultation came to an end in December 2016 and the Commission is now working towards finalising the Pillar. During this long consultation (one of the longest ever organised by the Commission) many events, national seminars and direct contacts took place to discuss and gather feedback.

The consultation took place on the basis of a Communication, providing a reference framework outlining the main basic principles of what should be the European social model. This model has worked in the past but it is important to check whether it is still fit for purpose, whether there are gaps and which objectives the national level should be stimulated to strive towards.

It is important to understand that the Pillar as such is based on the current acquis and does not create new rights. Overall, the consultation has pointed out that the current framework does not have many gaps – rather, there are problems with the implementation. This is why the Commission would like to boost upwards convergence and develop an instrument to push the national level to do what that they should have been doing already.

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

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

Each of these chapters contains a number of principles that are of general application. They do not address directly the needs of specific population groups but are however relevant to them.

The geographical scope – the Pillar only targets Eurozone countries – has created unease amongst stakeholders as many respondent have pointed out that the principles outlined in the Pillar are relevant to all Member States. However, other Member States can join on a voluntary basis, depending on the political will of their governments; they are not excluded.

The Commission aims at adopting the Social Pillar in the spring and will then look at how to make its principles operational, by means of a variety of tools it has at its disposal, i.e. legislation, non-legislative proposals, funding, etc.

Raquel Cortés underlined that, in implementing the Pillar, the principle of subsidiary will be fully respected. However, the Commission will make use of the tools available to push for national reforms in order to get to the set objectives, e.g. the European Semester Process. Existing funding possibilities will also continue but these will be more orientated towards the objectives of the Social Pillar. Where possible and necessary, the Commission will come forward with legislative proposals. In any case, the work on the Pillar will be accompanied by a package of other social initiatives, such as the work on life/work balance, active inclusion and others. In all these processes the role of civil society will remain crucial; the adoption of the Pillar is the beginning of a process rather than the end.

 

Donna Walsh (European Federation of Neurological Associations)

Donna Walsh (European Federation of Neurological Associations)

Donna Walsh (European Federation of Neurological Associations) (left) then spoke. She briefly introduced the focus areas of the MEP Interest Group on the Brain, Mind and Pain, i.e. stigma, quality of life (employment, education), patient involvement and research.

EFNA has submitted a joint response with Pain Alliance Europe to the Social Pillar consultation. EU social legislation is central to employment and educational opportunities for those affected by brain, mind and pain disorders. Although the Employment Equality Directive eliminates discrimination on grounds of disability in employment and vocational training there is no common definition of the term ‘disability’ across the EU, which hinders implementation of the Directive. The more ‘social’ definition provided by the UN Convention on the Rights of People with Disabilities should be adhered to as this provides more scope than the narrow medical definition.

Do we need more legislation of better implementation? It is within EU competency to coordinate the employment policies of Member States; this is formalised in the Europe2020 Strategy and implemented via the European Semester Process. Europe2020 aims to increase the employment rate amongst 20-64 year olds to 75% and reduce by at least 20 million the number of people at risk of poverty and social exclusion. However, given demographic ageing and higher retirement age, resulting in an increasing prevalence of chronic conditions in those of working age – these targets cannot be met without measures to assist those affected to be retained or reintegrated into the workforce.

Health at work is not just a socio-economic issue. In order to avail of the opportunities to access employment that the European Social Pillar could provide, people living with brain, mind and pain disorders need early and accurate diagnosis as well as appropriate treatment and management.

Big health inequalities persist across the EU; for instance, two thirds of people with brain disorders receive no treatment and 40% of people with chronic pain report that it is not adequately controlled.

Therefore, the EU and its Member States must acknowledge that accurate, early diagnosis and appropriate treatment/management are necessary to enable those with chronic conditions to optimise the social acquis covered by the European Social Pillar. Improving Europe-wide access to existing treatments and supporting the development of innovative medicines to better treat these conditions is an important part of supporting employment and economic productivity amongst patients and carers. The European Social Pillar must span and be embraced throughout all relevant EU Commission DG’s and underpin all aspects of its work.

EFNA can contribute to the implementation of the Social Pillar by optimising its network to inform the process with a patient perspective, feedback on implementation successes and failures, disseminate information and use the Brain, Mind and Pain Interest Group to promote and share best practice.

Andreea Antonovici (European Multiple Sclerosis Platform)

Andreea Antonovici (European Multiple Sclerosis Platform)

The next panelist, Andreea Antonovici (European Multiple Sclerosis Platform), briefly introduced her organisation and its work in relation to employment:

  • A Call to Action on Access to Employment for People with MS was launched in 2015, supported by over 70 MEPs.
  • Believe and Achieve’: a paid internship programme aimed to create opportunities for young people with multiple sclerosis to develop their professional skills through partnerships with businesses across Europe.
  • ‘Paving the Path to Participation’: a project supported by the European Commission that looks aimed to stimulate policy change that will support maximum participation of people with MS in the European labour market.
  • Employment Pact’: asking businesses, people with MS and other neurological conditions to commit to safe, healthy workplaces, where people know that, if they are diagnosed with a chronic illness their employer has the tools in place to help them stay in work.
  • ‘Practical Toolkit for Employers’ to support adaptation of the working environment for people with multiple sclerosis that will lead to better work practices for all staff members. “If you’re a good employer of somebody with MS, you’re a good employer in general because you will have the right kind of work policies, conditions and awareness within your organisation.”
  • An ‘Employment Guide for Healthcare Professionals’: developed in cooperation with the Work Foundation? guide for neurologists and other health care professionals to help them hold effective conversations regarding work with patients with MS. EMSP is currently working to use the Pact and the Toolkit for Employers at national level.

In relation to the Social Pillar, EMSP has submitted a response which focuses on the need to tackle inequalities and make the necessary changes to make sure EU legislation is being applied at national level in order to put an end to discrimination. EMSP pledges for the empowerment of people with disabilities as they need to have access to the right tools and information in order to stand up for their rights. As already underlined by Donna Walsh, because there is no common definition of disability, accepted and implemented in all Member States, determining eligibility for income maintenance is still difficult. This leads to employers finding gaps in the law and patients being discriminated. The Social Pillar will also need to enforce a minimum income scheme for people with disabilities, to ensure their rights will be respected, as recommended by the United Nations Committee on the Rights of Persons with Disabilities.

Brain disorders cost more than €800 billion each year. Helping people with MS and chronic conditions stay in employment is beneficial not only for the individual, but for the European economy as a whole. We need to educate the employers and provide them with the right tools and support to make the necessary adaptations and very importantly, work needs to be considered a clinical outcome.

 

Katie Gallagher (European Patients’ Forum)

Katie Gallagher (European Patients’ Forum)

The final panelist was Katie Gallagher (European Patients’ Forum), who briefly introduced her organisation and its mission. EPF’s vision is that all patients in the EU should have equitable access to high-quality, patient-centered health and social care. However, inequalities persist both in terms of access to healthcare and quality of care, within and between Member States.

One of the most pressing and social priorities is the need to develop a supportive working environment for patients. Patients can face stigma or discrimination at work at various stages which prevents them from entering/remaining in the labour market. Ensuring that workplaces offer support for patients is crucial to achieve Europe2020’s goal of “smart, sustainable and inclusive growth”

EPF has also submitted a response to the Social Pillar consultation. This emphasises that the Social Pillar should apply to all Member States rather than to the Eurozone countries only. Appropriate means and tools need to be defined to support implementation, including indicators to monitor Member States’ accountability. Access to healthcare should feature prominently within social rights, given that this is a fundamental right enshrined in the EU Treaties, and inequalities in access have a negative impact on society as a whole. EPF also emphasises the empowerment of people in relation to their health and social rights through provision of information, awareness and health literacy – this is necessary to make theoretical rights a reality. Equal treatment in education and employment for vulnerable groups, such as young patients with chronic and long-term conditions who face discrimination and barriers in education and in entering employment needs to be guaranteed. There is a need to provide more support for informal/family carers. Discrimination on grounds of health status in the workplace should be prohibited; workplaces should be accessible and provide reasonable accommodation.

EPF has recently launched a campaign with the aim to achieve universal health coverage by 2030, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.

 

Sam Kynman (European Pain Federation EFIC)

Sam Kynman (European Pain Federation EFIC)

The final speaker, Sam Kynman (European Pain Federation EFIC) gave a brief presentation of his organisation’s campaigning and advocacy work to raise awareness of the personal and societal impact of pain. As national governments are as important as the Commission and Parliament in determining the topics that feature on the social and health agenda, Sam Kynman made a strong case to target national governments to effectuate change. He illustrated this need with an account of EFIC’s (successful) efforts to put pain on the Maltese Presidency agenda. These efforts have met with success for a variety of reasons: identification of strong local champions and determining the common ground, forging alliances, working in partnership and seeking as much contacts with relevant policy makers as possible. Moreover, it is important to bring all relevant stakeholders together. EFIC represents health care practitioners and actively works with patients, the health industry and other partners to raise awareness of the personal and societal impact of pain and to improve policies for those affected.

EFIC will organise a large symposium during the Maltese EU Presidency (where the Maltese President will speak), as a direct result of advocacy efforts. The Italian Presidency (2014) also paid attention to pain and its impact and EFIC will concentrate on the Estonian Presidency next. These are small but necessary steps which will create the required momentum at some point – someday pain may be used as an indicator for health policies across the EU.

 

Discussion

  • Participants referred to the recent Commission White paper on the future of Europe, where one of the scenarios presented proposes doing much less in the areas of health and social policy. It is hoped that this will not hinder the efforts of the Commission to boost these areas by means of the Social Pillar. Fortunately, not all scenarios presented are equally pessimistic.
  • Questions were asked about the geographical scope of the Social Pillar and whether limiting it to the Eurozone will not create wider divisions between the countries. Non-Eurozone countries can of course join on a voluntary basis, depending on the will of the individual governments.
  • Questions were asked about how the European Parliament can influence this movement towards a more social Europe as social policy remains the competence of the national level; there is a dilemma as Members of the European Parliament present in the meeting indicated that on many occasions, Member States do not like initiatives that are perceived as interfering with national competence. Brexit has partly resulted from this view. There are wide misconceptions about the power of the Commission; people need to be more aware of the power of national governments.
  • Brenda O’Brien (OSHA) informed participants of a recent country-by-country analysis of return to work policies, by country, by policy and by company; this work was funded by the European Parliament. The report is easily accessible and informative, and was prepared against the background of the ageing of the workforce. It can be found at www.Healthy-workplace.eu.

 

Conclusions

Nessa Childers MEP

Nessa Childers MEP

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

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

 

 

#MAKEWORKWORK FOR THOSE AFFECTED BY NEUROLOGICAL DISORDERS AND CHRONIC PAIN CONDITIONS

bmp-nov29

Breakfast Meeting of the MEP Interest Group on Brain, Mind and Pain
hosted by Jeroen Lenaers MEP.

November 29th 2016 from 8.30h – 10.00h
Member’s Salon, European Parliament, Brussels

MEP Jeroen Lenaers opened the meeting by commending – once again – the high turnout and ongoing interest in the work of the Interest Group.

He said that, so far, the Interest Group has been ‘more than just a talking shop’ and has achieved some tangible results in the form of amendments to the EU Strategic Framework on Health and Safety at Work, for example.

He said the recently launched Written Declaration was another step forward in successful advocacy for those affected by neurological and chronic pain conditions, in relation to employment issues.

Speaker 1: Antonella Cardone, Executive Director, Fit for Work Global Alliance, The Work Foundation, Lancaster University

Antonella Cardone began by emphasizing the link between health and work: ‘Good work has been shown to improve health outcomes, and good health enables people to be productive workers,’ she said. However, there is a lack of integration between health systems and employment and welfare policy – which must be addressed.

She stressed that a focus on health at work is more important than ever due to the ageing workforce, later retirement and the increasing prevalence of chronic diseases. If people are expected to work longer, then more must be done to ensure that they are healthy and capable to do so.

She listed the wider societal implications of poor workforce health. For example:

  • Reduced Productivity
  • Early withdrawal from the workforce
  • Increased social exclusion and poverty
  • Impact on family and carers
  • Reduced tax revenue
  • Increased welfare spending
  • Increased healthcare costs

 

She, then, quoted an occupational therapist working with schizophrenia patients, who said: ‘People’s aspirations are to have a girlfriend, a job, a new house. They don’t say “I want less symptoms”.’

This, she said, illustrates why work should be regarded as a clinical outcome – which is often not the case in practice.

In theory, governments across Europe aim to take the societal perspective – which includes consideration of the impact of a healthcare intervention on the patient’s ability to work and the economic effect

In reality, she said, we see that a health care system perspective is taken – covering only those costs and benefits of immediate relevance to the health care system.

However, she said that return on the investment can – and should – be also shown through productivity, job retention or Return-To-Work.

She also stressed that health investment decisions should consider the therapeutic benefits that good work can bring. It should explore, too, how early interventions – such as reasonable accommodations at work – can play a significant role beyond drugs and devices.

She concluded by quoting from the OECD’s recently published Health at a Glance, which states:

Although health and labour market policies are often formulated independently of one another, this chapter has shown the need for greater intersectoral collaboration. Both labour market and health outcomes would greatly benefit from improved policy integration.

You can access the full presentation here

 

Note: The Written Declaration encourages the collaboration of DG’s SANTE, ECFIN, EMPL AND REGIO around workplace issues for those affected by chronic conditions and will be followed up in the ways suggested above.

Speaker 2: Boglárka Bóla, Project Manager, EU-OSHA

Boglárka Bóla spoke about the main findings from EU-OSHA’s ´Rehabilitation and return to work: Analysis report on EU and MSs policies, strategies and programmes´.

She said, a number of elements explain why certain national systems for rehabilitation and return-to-work are more successful than others:

  1. Countries that have put in place integrated systems for rehabilitation and return-to-work have generally inscribed it into a broader policy framework which tackles the sustainability of work and the need to retain people longer at work in good and healthy conditions.
  2. Early intervention in the return-to-work process is another critical success factor. The longer a person stays off work because of a health problem, the lower are their chances of returning to work. The new Fit for Work advice services implemented in the UK for instance proposes assessment of working capacity four weeks after the person has been placed on temporary work incapacity.
  3. A tailored approach for a person affected allows information about the worker’s occupational and personal history to be taken into account, in order to create an individual plan with adapted measures for rehabilitation/return to work.
  4. Interdisciplinary teams, including medical and non-medical professions, should work together to determine the appropriate pathway for the worker’s reintegration into the workplace or labour market. The team should be led by a case-manager, and the employer should be involved in all discussions/decisions-taken.

She said that there already exists EU legislation on access to employment, supplemented by some good practice examples at the national and company level. These best practices should be shared, and the relevant legislation and available resources also promoted to ensure implementation.

You can access the full presentation here
The Written Declaration encourages the sharing of best practice, the implementation of existing legislation encouraged (e.g. via the European Semester recommendations) and the promotion of EU instruments e.g. the European Social Fund to support such actions.

Following the presentations, there was input from the floor. Contributions included Paul Bart from the Dutch Fit4Work Coalition, who presented a Declaration which they had produced on the topic.

Prof. Chris Wells, President of the European Pain Federation also spoke about the role of the medical profession in ensuring the return to work of patients. He said that this was one of the work-streams of the Societal Impact of Pain Platform (SIP) and an area in which he would personally take the lead. He gave his commitment to ensuring that European pain specialists focus on return to work as a patient preferred outcome of treatment.

The meeting was closed by MEP Elena Gentile, a co-author of the Written Declaration who encouraged all present to get involved in supporting this important initiative.

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