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.

Working Meeting of the MEP Interest Group on Brain, Mind and Pain. #MakeWorkWork – Launch of the Written Declaration

October 25, 2016 from 08.30 – 10.00
Members’ Salon, European Parliament, Strasbourg

‘We know integrating people with a chronic pain or brain condition in employment is socio-economically beneficial.’ Austrian MEP Mr Heinz Becker said opening the meeting in Strasbourg. ‘Getting people who want to work, back to work decreases the volume of disability allowance and early retirement payments. That is why this Written Declaration on Access to Employment for those affected by brain and pain disorders is important.’

marian-wd

Marian Harkin MEP with Heinz Becker MEP

Manuela Messmer-Wullen then told the group of six European parliamentarians and three advisors of her anger and loss of confidence after a stroke changed her life and how an understanding employer helped her regain her self-assurance. ‘We need to look at examples of good practice for example flexible working for people with chronic illness.’

‘We need to look at examples of good practice for example flexible working for people with chronic illness.’

Marian Harkin was shocked by the numbers affected 1 in 3 Europeans are affected by a brain disorder and 1 in 5 by chronic pain. She emphasised the importance of patients and their families contacting their members of the European parliament (MEPs) to sign the Written Declaration. She explained a Written Declaration is statement of policy which is placed before the Parliament for signature. Any MEP can sign if they support the Written Declaration and would like it to become the official position of the European Parliament. We need 377 MEP signatures before 12 January for this to happen.

jeoen-wd

Jeroen Lenaers MEP

Vice- Chair of the Employment committee Danuta Jazłowiecka MEP, pledged her support as did fellow Polish MEP Bogdan Wenta, the Slovakian Jana Žitňanská and George Bach.

The full Declaration can be read here.

 

Can you get your MEPs to sign?

You can download a list of MEPs by country  along with template emails to send to the MEPs in your country.

Contact Heather Clarke EFNA’s EU Policy advisor euaffairs@efna.net for further assistance.
Follow our campaign on Twitter with the hashtag #MakeWorkWork.

 

Patient Involvement in Research – How and Why those with Brain, Mind and Pain Disorders must be involved

Patient Involvement in Research – How and Why those with Brain, Mind and Pain Disorders must be involved

22 June 2016, 8.30 -10.00h
Members’ Salon, European Parliament, Brussels

This meeting was hosted by Marian Harkin MEP, who opened by saying that many life-threatening diseases have been eradicated thanks to years of effort by physicians, scientists, and medical professionals investigating the causes of and potential treatments for disease.

However, she said: “The brain does not give up its secrets easily and, as we know, the brain is the origin of many disabling diseases including chronic pain, depression and neurodegenerative diseases such as multiple sclerosis. And all have a huge impact on the lives of people affected by them, as well as the healthcare systems that support them.”

She stressed how crucial it is that the huge challenges posed by brain and pain disorders are addressed through integrated, coordinated and co-operative efforts, both at the European and national level.

The first speaker was EFNA Executive Director, Donna Walsh, who said that research was a central focus of the Interest Group. This, she attributed to the huge unmet needs of patients affected by brain, mind and pain disorders. For many of these disorders there is no cure. In fact, in most cases, we are still unaware of the exact cause. More research is needed – from basic to clinical to translational. However, due to the complexity of this research, the high failure rates and the lengthy development times (compared to other disease areas), many companies are downsizing or closing their operations in this area. She called for the EU to ensure that public funding through H2020 and the IMI ensured that they bridged this gap.

She also called for the EU to ensure that meaningful patient involvement was a feature of successful funding proposals. This is particularly important in brain, mind and pain disorders where:

  • The most impactful symptoms and disease progress often cannot be directly measured and must be assessed using questionnaires or interviews with patients
  • Clinical scales against which outcomes can be measured are, therefore, limited
  • External markers of disease progress are often absent
  • Secondary symptoms often more burdensome than primary/Multi-Morbidity

You can access the full presentation here

 

The next speaker – Isabelle Abbey-Vital of Parkinson’s UK – spoke about the UK system of patient and public involvement [PPI] as an example of best practice.

Evidence of PPI is a compulsory requirement for National Institute of Health Research (NIHR) funding streams, and is increasingly being recognized as important by other major funders. In fact, research collated by NIHR has suggested that PPI, done well, can:

  • Improve the quality and relevance of research
  • Offer a unique insight and perspective from people with personal knowledge and lived experience of a condition/service/treatment
  • Ensure accountability for public or charity funding
  • Empower patients and carers, providing a route to influencing change and improvement in issues which concern people most

However, she said, that while many researchers are open to patient involvement, they are not always sure where to start. This led to the development of Parkinson’s UK ‘Resource for Researchers’ which outlines how and why they should engage in PPI.

In summing up, she called for:

  • More emphasis on patient involvement in funding calls for research proposals
  • Increased availability of guidelines and training on patient involvement from the EU to researchers applying for grants
  • Improved support for patient organizations to facilitate involvement

You can access the full presentation here

 

Prof. Judith Rosmalen

Prof. Judith Rosmalen

The next speaker was Prof. Judith Rosmalen of the University of Gronigen. She began by stating that medical research is traditionally focused on diseases, but how we feel is determined by symptoms. Most symptoms remain medically unexplained, and many EU citizens have to live with their symptoms every day.

She has worked with her team to develop an eHealth system called Master your Symptoms, which will provide patients with personalized self-help guidance in order to manage their symptoms.

In the context of this project, the researchers asked professionals what interventions they considered most useful for patients. They also asked patients what interventions they preferred. It was then discovered that the ideas of the professionals did not meet the patients needs. One aspect which was particularly emphasised from the patients was the need for better communication with health care professionals.

Now, with the help of a grant from EIT Health, the researchers are developing an online course to train professionals in communication with patients with medically unexplained symptoms. To ensure the patient perspective is heard throughout this project, Pain Alliance Europe will be actively involved.

Based on her experiences, Prof. Rosmalen had the following recommendations for implementation at the EU level.

  • Provide funding for topics that are considered relevant by patients. Medicine is not about diseases, it is about patients. Ask in grant proposals for information on how patients were and will be involved in the project.
  • Expand the EU focus on eHealth initiatives, also to somatic symptoms. eHealth programs are able to support patients in their self-management of diseases and enable patients to actively participate in their care.
  • Empower patients and caregivers by increasing their general knowledge about health problems. Massive Open Online Courses (MOOCs) may be a very efficient method to share knowledge with patients and citizens across Europe.

 

The next speaker was Rachel Schindler MD, Vice-President, Neuroscience at Pfizer. She began by stating that there are many opportunities for bilateral exchange of information between patients and drug developers throughout the drug development process.

She called on EU policy-makers to ensure that barriers are overcome to ensure that we:

  • Involve patients early from product concept through clinical development, regulatory approval, and the product lifecycle
  • Enhance the patient experience in clinical development
  • Ensure medicines that are developed meet patient needs

This involvement has multiple potential benefits, including:

  • Drugs developed are more closely aligned with patient needs
  • Treatments are developed more quickly and efficiently
  • By being more involved, patients may have a greater awareness and interest in managing their health and well being

 

BONI

Michael Boni MEP

The meeting finished with a fascinating, keynote presentation from Michal Boni MEP on the opportunities for greater patient involvement in research via e- and m-Health applications.

“This is – the new opportunity due to new technologies, due to digital game changer – to make the healthcare systems much more preventive, cost effective, patient centric, with high quality results of the therapies due to personalization of treatment. And with the new possibility: to collect more data, to process them in the direction to have more knowledge on specificities of some diseases,” he said.

He particurlarly called for:

  • Better and stronger cooperation between all stakeholders
  • A focus on increasing digital health literacy
  • Reasonable and flexible policies at all levels, particularly in the area of data

He finished by pleding his support for the MEP Interest Group on Brain, Mind and Pain – saying: We need the leadership – common leadership and shared responsibilities. So, let’s do this – together!

You can access the full speech here.
You can also read his position paper on mHealth.

The meeting finished with a short discussion session with contributions from the floor. These included input from Magda Chlebus of EFPIA who spoke about three upcoming IMI projects which will explore chronic pain, but also – in October – the launch of a project on patient engagement (Why? Who? When?). She encouraged the patient partners of the Interest Group to get involved.

Catherine Berens of DG Research, Neuroscience, also participated on the day and spoke about how the Commission increasingly recognises the central role of patients. She encouraged patient advocates/organisations to contribute to their wide consultations around their proposed work programmes. She also said that there is now more scope for patient participation in Horizon 2020. This includes patient representatives in the Advisory Group but also within individual projects, where their costs to participate are fully covered.

Marian Harkin thanked all speakers, participants and organisers and closed the meeting.

 

DATE FOR YOUR DIARY
The next meeting is scheduled to take place on November 29th 2016 in Brussels and will be entitled (provisionally): Retain, Rehabilitate and Reintegrate

 

Note: During the meeting both MEP Harkin and Ann Little, EFNA President, updated participants on the Interest Group’s upcoming Written Declaration on Access to Employment. This will be open for signing from September 12th – with a launch event in Strasbourg on September 13th, hosted by MEP Heinz Becker. All present were encouraged to get involved in asking any MEP contacts, particularly nationally, to sign. The Interest Group will provide promotional materials and templates to equip those willing to support to get involved. Contact: euaffairs@efna.net for any further information.

Neurological and Chronic Pain Disorders at Work – Meeting report

February 24, 2016 from 08.30 – 10.00
Members’ Salon, European Parliament, Brussels, Belgium

 

An initiative of the European Federation of Neurological Associations [EFNA] & Pain Alliance Europe [PAE]

This meeting was hosted by Jeroen Lenaers MEP, who opened the event by saying that those affected by neurological and chronic pain disorders were at a ‘double disadvantage’ in terms of access to employment and education. He mentioned how the debilitating symptoms and side-effects of treatment can mean that for these patients it can be difficult to find and then remain in employment. Additionally, those who are succesful then need to, not only contend with their condition, but also the stigma and social biases that it can create.

He said that even minor adjustments to the working environment can help to combat the issues raised above. He drew the audience’s attention to an amendement which he – and his fellow co-chair Marian Harkin – supported, which was put forward by the Interest Group to the Strategic Framework on Health and Safety at Work. This had been incorporated in the final draft:

It ‘draws the attention of the Commission to the increased number of workers affected by chronic illness in the workforce; takes the view that accessible and safe jobs should be available for people affected by terminal illnesses, chronic and long-term conditions and disability; urges the Member States to focus on retention and integration of people affected by chronic diseases as well as to support reasonable adaptation of workplaces, which will ensure a timely return to work; calls on the Commission to promote integration and rehabilitation measures for people with disabilities and to support Member States’ efforts by raising awareness and identifying and sharing good practices on accommodations and adjustments in the workplace; urges Eurofound to further examine and analyse the employment opportunities and the degree of employability of people with chronic diseases.’

stigma-presentationThe first speaker was Dr. Chiara Scaratti of the Besta Neurological Institute, Italy. She presented the results of a survey conducted by the European Federation of Neurological Associations [EFNA], which had almost 5000 responses from across Europe, covering a wide spectrum of brain disorders.

The analysis of these results showed that stigma in the workplace was a common problem encountered by those living with neurological disorders. It was reported that:

  • Women perceive stigma more than men
  • Young people experience stigma more than older workers
  • The lower the educational level, the higher the stigma
  • Workplace stigma increases after 1 year of illness
  • Workplace stigma is higher for those who experience pain and increases with pain intensity

She summed up by saying that urgent attention was needed to address levels of stigma at work felt by the vulnerable groups mentioned above. She said: ‘Work impacts on social cohesion and on people’s quality of life. Thus, identifying first and then caring about workers with neurological disorders could benefit employers, thanks to tailored interventions. A healthier work environment can be a facilitator, and not a barrier, in helping to prevent increases in the levels of disability experienced by people affected by neurological disorders’.

24.2The next speaker – Prof. Dr. Michiel Reneman of the University of Groningen – supported the point that work can have a therapeutic affect on patients – supporting overall physical and mental wellbeing.

He called for the European Institutions to promote Vocational Rehabilitation [VR], which he described as ‘whatever helps people to return to work or stay at work’, and said that VR:

  • Is proven effective and efficient; rehab works!
  • Could be supported by a very good business case
  • Should be made available, alongside modified work where required, for all EU citizens with health related work participation challenges
  • Public education was needed to promote this concept
  • New technology should be used to assist Healthy Aging @ Work

In conclusion, he made a plea for health and employment departments at local, regional, national and European level to work together – rather that in silos.

The next two presentations were real-life experiences from the employer and employee focussing on the benefits and challenges of people affected by neurological disorders participating in the workforce.

Karin Hellsvik presented a case-study from Biogen Italy who had hired a person affected by multiple scerlosis [MS] as part of an internship programme – Believe and Achieve – coordinated by the European MS Platform. She said their biggest learning was that internal HR policies can inadvertently lead to a person being ‘labelled’, and over-compensating for stigma can actually exacerbate the problem. She said it was important for the employer and employee to work together in creating a ‘safe and comfortable’ environment.

Jane Whelan, a person affected by severe migraine, spoke about the impact that her disorder had on her career progression but outlined minor workplace modifications e.g. felxible working hours, regular breaks, extra time for travel, etc. which helped to ensure she could better prevent attacks and manage them when they occured (as outlined in the amendment above). However, she said that disclosure to her boss and colleagues was necessary to ensure these adjustments were put in place and that the ‘invisible’ nature of the condition often led to scepticism, even amongst those who were aware of her diagnosis.

The final presentation was from Matthijs Groenveld, attache to the Dutch EU Presidency. He said that employment issues were at the heart of the European political agenda, and emphasised that a socially inclusive labour market was needed if we are to have a pan-European, job-rich economic recovery. He said that the employment guidelines as part of the European Semester process could be a vehicle through which the issues raised during the meeting could be pursued. However, he said there were also many other pieces of EU legislation which would be drawn upon to ensure access to employment and education for thos affected by neurological disorders and chornic pain conditions. The Dutch Presidency is currently awaiting a review of 24 Directives on Occupational Health and Safety, which will be accompanied by proposals on how this legilsation can be consolidated and improved. He advsied the Interest Group to follow the outcomes closely and to contribute if appropriate.

Marian Harkin, MEP co-chair, then presented a draft Written Declaration produced by the Interest Group which she said she hoped would be passed. If so, this would give patients/patient organisations across Europe another tool with which to advocate for their employment/educational rights at a national level. She said that this would be tweaked further based on the feedback from the meeting and encouraged those present to contact their national MEPs, once approved/opened, to to ask them to sign. Donna Walsh, EFNA Executive Director, said that attendees would be sent some templates to allow them to reach out effectively and confirmed that if the Declaration was passed, the Interest Group would work on a toolkit to enable its implementation.

The meeting finished with a discussion – the result of which was used to reshape the Written Declaration, which will be launched in autumn 2016. The final text will be published on www.brainmindpain.eu once approved and open for signing.

 

Tackling the Stigma of Brain, Mind and Pain Disorders

Meeting of the Interest Group on Brain, Mind and Pain

– In partnership with the Interest Group on Mental Health, Wellbeing and Brain Disorders

14 October 2015, European Parliament, Brussels

Meeting report

 

_P3B6094

(Left: MEP Nessa Childers, Right: Ann Little, President EFNA)

Ann Little (President, EFNA) opened the meeting welcoming participants and underlining that stigma is at the top of the list of important issues for all those affected by brain, pain and mental health disorders. Stigma stems from ignorance and fear and has pervasive consequences in all areas of life. Stigma not only results in negative behaviour; it has many other consequences, for instance in the area of funding. Brain, pain and mental health conditions occur twice as much as cancer-related conditions, yet research on cancer and cancer organisations receive twice as much funding. There is a need for more awareness of these conditions, which will also help those affected to seek help earlier.

Ann Little then gave the floor to Marian Harkin MEP, who paid respect to GAMIAN-Europe President Pedro Montellano, who sadly passed away on 2 October. A one minute silences was observed.

Marian Harkin welcomed the two Interest Groups working together on this issue, and emphasized the grave influence of stigma persons affected by brain, pain and mental health conditions and their carers. There is a growing need for more awareness and clear information. Listening to those who suffer stigma and how it impacts on their lives is crucial in this respect, and the meeting provided the opportunity to do just that. Nessa Childers MEP agreed, and stated that it is hugely important to get stakeholders and the general public interested in these conditions, as more and better information will help reduce stigma. She considers it part of her duty as an MEP to host meetings of this kind.

 

Session 1:             Our personal experience of stigma

During this session, Liisa Mikonen (person affected by chronic pain), Andrea Bilbow OBE (parent of children affected by ADHD) and Emily Benson (daughter of dystonia patient) shared their personal experiences of stigma.

Liisa Mikonen

Liisa Mikonen

Liisa Mikonen talked about the prejudice, disbelief and negative attitudes her condition triggers in society, working life and social and family life. She also wondered why patients are viewed so differently from non-patients and why their opinions and knowledge often do not seem to count.

Andrea Bilbow talked about society, the media and teachers blaming her (parents in general) for the problems and condition of children affected by ADHD. She also underlined the stigma surrounding existing medication for ADHD and expressed the hope that ADHD would be recognized as a mainstream and treatable condition.

Emily Benson told her story as a daughter of a cervical dystonia patient, which was diagnosed when Emily was seven. She has become a real expert on the disease and while her mother, Emily herself and her family have found a way to live with the impact of dystonia, stigma is a negative factor. Emily would wish for much greater awareness of the condition, which would help overcome stigma.

Lisa Mokenen

Closing the session, Nessa Childers MEP underlined the importance of learning from these testimonials and the need for more awareness, education and training.

 

Session 2               The evidence of stigma

The first speaker in this session was neurologist Prof. Matilde Leonardi (Besta Neurological Institute) who informed the audience of the outcomes of a Patient Experience Survey carried out by EFNA between November 2014 and February 2015. This was a cross-sectional study involving organisations involved with advocacy and support for patients with neurological conditions in 27 European countries. The data analysis was carried out by Professor Leonardi and her team.

The survey consisted of a questionnaire created by EFNA, collecting information on socio-demographic variables, clinical variables, impact on various life domains, social support, psychological symptoms, somatic symptoms, and stigma. Almost 5.000 patients replied.

One of the main finding was that 57% of the sample feels stigmatised at least occasionally. To evaluate the stigma in all its components, 3 scales were developed, addressing workplace stigma, social stigma and overall well-being. In relation to workplace, it was found that 11% of the total sample (457 persons) perceive a relevant workplace stigma. The findings showed that 16% of the total sample (712 persons) perceive a relevant social stigma. And in terms of overall well-being, 17% of the total sample (710 persons) perceive an overall negative well-being. Another interesting finding was that persons who think that their condition should have been diagnosed earlier perceive a significant higher workplace and social stigma and a worse overall well-being compared to persons who think that their condition was diagnosed on time.

Matilde Leonardi further stated that according to the bio-psycho-social model disability is the result of an interaction of a health condition with the environment: any barrier in this environment increases disability. Stigma is such a barrier, as it increases disability of people with all psychiatric and brain disorders. This is a violation of human rights as well as a violation of dignity of the person; stigma stands in the way of equal opportunities. Delays in diagnosis or denying the patient the right to be prescribed the most efficacious drugs are examples of such ‘barrier’ behavior.

Therefore, stigma should not only be investigated in surveys, but also considered when planning policies and interventions for people with neurological disorders. A “fit for purpose” data collection with validated instruments could allow a better tailoring of possible interventions and services. Much remains to be done at different societal levels, to identify behaviors, laws, attitudes and practices that could be prevent stigma, but interventions ARE possible and are a political choice.

The second speaker, Paul Arteel (Executive Director, GAMIAN-Europe) informed the audience of the patient’s perspective on stigma and exclusion, as measured by a number of patient surveys carried out by his organisation. These assess the views of the “expert by experience” on specific themes (stigma, physical health, adherence to treatment, mental health and workplace). These are not intended as academic studies; rather, they serve to assess what lives amongst patients, to feed into advocacy activities, help inform policy makers and help clinicians to know the extent to which patients’ views can positively or adversely influence therapeutic outcomes.

The first GAMIAN-Europe survey (2006) addressed stigma and yielded 4500 responses from 20 countries. A second, identical survey on stigma was carried out 5 years later, in order to see if there were (positive or negative) changes. The surveys were designed to measure the levels of internalised stigma, the degree of perceived discrimination and the levels of self-esteem and empowerment).

It was found that a positive evolution on self-stigma and empowerment had taken place. However, there was a small increase in the level of perceived hold negative attitudes by the general public.

Stigma has been a major item in other GAMIAN-Europe surveys as well. For instance, the 2011 survey on Physical aspects of Mental Health showed that 20% of the patients that experienced barriers to contact a doctor to treat physical problems indicated stigma and fear of disclosing their mental health problem to their GP as the reason. The 2013 survey on Mental Health and Workplace (2013) revealed that 50% of the patients did not want to inform their employers on their mental health problems. In conclusion, Paul Arteel underlined that, for people confronted with mental illness stigma is not a theoretical concept; it affects daily life, physical health, treatment and social inclusion. He made a strong plea for access to and availability of psychotherapy, as human contact remains one of the most vital elements on the way to recovery.

 

The final speaker in the session was Joop van Griensven (President Pain Alliance Europe), who stated that stigma relates to a belief in false or inadequate information with a strong impact on the person and their families. The social impact is enormous Where does it come from? Who creates this? Is it the general public, regulators, health care professionals, patients?

It is the right of a patient to avoid unnecessary pain. However, the experience of patients is often not believed – because of stigma. This needs to be changed. A recent survey, The PAIN Patients Pathways Project, amongst health professionals has found that 77 % of those questioned state that they believe their patients. This is interpreted as a good result; however, it still leaves 1 in 4 health professionals that does not believe patients. So 25 million pain-patients in Europe have a doctor that does not believe them. The findings in governmental institutions are even more devastating.

These issues should be addressed at a higher policy level. The differences between countries in terms of access to services and treatment and basic patients’ rights are enormous and these differences should be addressed by a higher authority.

Stigma cannot be changed by pointing at others and expecting them to take action. It can only be solved if patients and other stakeholders work together. This is why a European awareness campaign will be developed by EFNA and the European Pain Alliance, in order to create an environment of trust between all stakeholders. This will help to achieve the basic right of each patient: the right to be believed.

 

Nessa Childers MEP then gave the floor to Michael Hübel (European Commission, DG SANTE) who shared some reflections.

Better jobs and improved growth are the key priority for the Commission. Economic, social and employment policies and healthy populations, enabling people to be part of society are all part of this priority.

Three quarters of EU health care cost are related to chronic disease and the proportion of brain disorders and mental health conditions within this is huge. This does not only relate to the direct costs of the conditions, but also to indirect costs, due to (for instance) long term absence and early retirement. If awareness of these facts does not increase and if policy makers and service providers cannot be convinced that this is a serious issue, a situation where people will not reach their full potential will be continued.

Stigma is a very important aspect in this respect. It often relates or leads to outright discrimination. There are several tools, such as the Convention of the Rights of People with a Disability, to which the EU has signed up. The Commission’s Mental Health Pact, the Joint Action on Mental Health and the work carried out to address mental health in the work place are all useful actions taken by the EU level.

How do people with mental disorders see themselves in this equation? While on the one hand side, we need the testimonials and experience of people affected by mental health conditions to raise awareness which could help combat stigma and address their needs appropriately, patients themselves are often reluctant or even fearful to reveal their situation.

The workplace would seem to be an ideal setting to promoting mental health and well-being, because so much time is spent there. In terms of the organisation of health services, the general trend towards community care based services should be seen as an opportunity to bring mental and physical health services together. However, the philosophy upon which these services are based will determine how they deal with and combat stigma.

Brain disorders can be prevented and we need more investment in policy and research. All these issues need to be looked at as the Joint Action on mental health is coming to a close.

Michael Hübel concluded by underlining that if we want to truly tackle the issues around chronic disease, we will need to look at mental as well as at physical health.

 

Heather Clarke, EU Affairs, EFNA

Heather Clarke, EU Affairs, EFNA

Marian Harkin MEP then gave the floor to Heather Clarke (EFNA), who briefly introduced the draft work plan for the Brain Mind and Pain Group in the area of stigma. The main activity will be the launch of a European awareness campaign addressing stigma, entitled ‘Under the umbrella’. This launch will take place during Brain Awareness Week and will take place in the European Parliament.

Heather Clarke also announced a meeting of the Brain Mind and Pain Group taking place on February 24 addressing issues around the workplace. Another meeting scheduled for June on the topic of patient involvement in research.


Paul Arteel (GAMIAN-Europe) outlined the plans of the Interest Group on Mental health, Well-being and Brain Disorders, stating that the overall aim for the coming period is to ensure an appropriate and more comprehensive follow-up to the EU Joint Action on Mental health. GAMIAN-Europe will be working with the co-chairs to table amendments to this effect for all relevant policy reports going through the European Parliament.

The next meeting will take place in December together with the Interest Group on Carers, which will address the needs of those caring for persons with mental health conditions.

For next year, joint meeting with the European Brain Council and the Brain, Mind and Pain Group are foreseen.

 

Discussion and Questions

During the discussion the following issues were raised:

  • The way doctors communicate with patients’ needs to be addressed. Often this is done in a patronising manner, and this helps to perpetuate stigma.
  • Several organisations of specialists informed the audience that they are in the process of working with patient organisations in various ways, for instance by setting up a patient liaison committee and organising joint sessions at relevant meetings. It is increasingly felt that working together with (neurological) patients is the only way to ensure better quality of life and better health.
  • The right to work, as enshrined in various Charters, is not the same as having the opportunity to work. Stigma very often gets in the way. While the principle is positive, it is void of content. The EU should take concrete action to tackle this. Information and awareness needs to be improved and increases.
  • When developing the stigma campaign a number of different dimensions and variables need to be taken into account such as the audiences (different messages may be required for different stakeholder groups) and whether it will be implemented top down or bottom up.
  • It is not only those affected by brain, pain and mental health conditions that suffer stigmatisation; those who treat them (psychiatrists, psychologists) are stigmatised as well.
  • Listening to patient testimonials is important; it educates health professionals and helps them deal with patients better.
  • Professional curricula taking better account of the patient experience and knowledge are being developed, and these should become the standard. The EU level could help the exchange of good practice and support wider dissemination of these curricula.
  • Events such as these provide the opportunity to talk directly to the policy makers. However, in these conversations we should not just present problems but also focus on possible solutions. It also needs to be borne in mind that health care remains a national competence and that it is unrealistic to ask for European legislation.

 

Christine Marking, 16 October 2015
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