Newsletter April 2017 – Welcome

 PAE Newsletter

joop-van-griensven

Around us, spring is approaching and we also notice that there are more and more activities that PAE and our member charities are working on. It shows that PAE is a strong living organization.

The survey which is taking place at this moment (see Pain Alliance Europe’s Survey on Chronic Pain) shows that people are willing to participate. They just need a little push in the right direction. It also is an indicator that for the next surveys that we are planning, we will need to reach out more directly to people. The outcome of this first survey will be given to our members at the General Assembly in June.

The General Assembly taking place in Malta this year promises to be a good place to show where PAE stands as a stakeholder in the field of chronic pain. With the help of our members, we can show that we are a stakeholder which needs to be involved in all the policy making.

The new project we will have started involves a research grant to do patient-centered innovative research. At the first meeting of the task force, we define the merits of the project, choose a name and the ‘brand style’ for the project. These will all be published very soon. Also, you will receive an invitation to suggest ideas for this grant. An explanation will be given to our members at the General Assembly.

The SIP Symposium taking place in Malta, 7-9 June 2017, promises to be a great event where all stakeholders will be present.  It will be an excellent opportunity not only to hear the latest on policy developments regarding chronic pain but also to increase your networks and in that way help to improve the quality of life of people living with chronic pain. Don’t forget to register as soon as possible as places are limited. Go to www.sip-platform.eu to register. Members of PAE, please indicate that you also will attend the pre-symposium activities and the General Assembly of PAE.

The Red Balloon Project will have its final event in Malta on June 7th on the evening before the SIP Symposium will take place. When you are coming to the SIP and to the General Assembly of PAE you shouldn’t miss out on this opportunity of participating in this event. It promises to be something special.

Then, of course, PAE board members have been active in reaching out to several organizations and companies to gain as much support for PAE as possible. Although the rate of success is difficult to measure, the general feeling is that we are having some progress in achieving what we want: more awareness for chronic pain patients and their situation on access to therapeutic, social and economic options. However, we are aware that we still are a long way from an ideal situation for the individual chronic pain patient in Europe. Together with our members and the other stakeholders, we can make the difference towards such an achievement. As this new spring is coming to life, so we feel a new impulse to our combined efforts to complete our mission and improve the quality of life for people living with chronic pain in Europe.

Joop van Griensven

President PAE

Survey on Chronic Pain

PAE News

shutterstock_125588156-survey-buttonAs you may already know, one of Pain Alliance Europe’s on-going projects is the survey we have elaborated with the support of our member organisations and translated in most of Europe’s languages so that as much chronic pain patients as possible may express their concerns and opinions.
The Survey’s deadline is the 15 April.

The results will then be analysed by a specialised department of the Erasmus University in Rotterdam, and the results of this analysis will be available early June.

The first presentation of the results will be done during Pain Alliance Europe General Assembly on the 9th June in Malta, where Pain Alliance members will be able to discuss the feedback received from the patients, the results of the survey and the improvements to be applied in the future to similar actions.

If you happen to be concerned with chronic pain, as a patient or as a carer, and you haven’t yet contributed to this action, please join by answering the questions meant to bring the problems related to chronic pain to the attention of the decision-makers and societal partners.

You may find the survey in different languages by accessing this article on Pain Alliance Europe’s Survey on Chronic Pain.

 

 

 

Patient Summit 2017

PAE News
Patient Summit

The Grünenthal first Patient Summit took place at the Steigenberger  Hotel in Amsterdam  on the 17-18 March.

The  first  Patient  Summit  brought  together  patient  advocates,  clinicians  and
Grünenthal  researchers  to  define  ways  to  bring  the  patient  voice  to  the   research  and  development  process.  The  meeting  focused  on  identifying  joint  initiatives  and  partnerships  to  further  our  understanding  of  three chronic  pain  areas  (vulvodynia,  bladder  pain,  and  stump/amputee  pain).  The  meeting  programme  and  format  were  guided  by  a  patient  steering  committee  and  included  an  overview  of  the  research  and  development  process,  and  three  workshops  that  were  specific  to  the  disease areas.

The  workshops of the event  include discussions on:
•   Vulvodynia:
o   Continue  development  of  a  new  PRO  using  advice  from  the  steering
committee
•   Bladder  pain:
o   Define  and  standardise  pain  descriptors  to  improve  diagnosis
•   Stump/amputee  pain:
o   Address  the  communication  challenges  throughout  the  patient  journey,
and  explore  the  need  for  patient  community  website

graphic illustration
The  key  aims  and  discussions  of  the  meeting,  as  well  as  the  desired outcomes,  were  also  captured  by  live   illustrators.

The conclusions of the summit highlighted Grünenthal’s commitment to continue involving patients in their research and development processes, concretising the ideas and outcomes of the workshops and debates; this means including in their processes the patient’s view on the complexity of treatment and the challenge of a diagnosis that is common to all cases presented during the event, but also exploring  other  aspects  of  early  research  and  development  such  as  the  design  of  protocols  for  clinical  trials.

Grünenthal Grant Agreement

PAE News
Patients’ voice to be heard louder in the domain of innovation

On the 8th of March Joop van Griensven, president of Pain Alliance Europe, and Norbert Van Rooij representing Grünenthal, have signed the mutual agreement on the initiated grant in the field of patient-centric innovations.

DSC00295The project wishes to become reference point reflecting the common aim of the parties to create an environment where patient centricity is the basis for future initiatives, to create a sense of innovation with direct impact on patients’ needs and to create awareness of chronic pain conditions and neurological disorders.

Several partner organisations are invited to take part in this project together with PAE and Grünenthal – EFIC European Pain Federation, EAN – European Academy of Neurology and EFNA – European Federation of Neurological Associations.

Stay tuned for more news about the evolution of this project in our next Newsletter and on Pain Alliance Europe’s website.

Brain Mind & Pain Meeting 8 March 2017 – EU Parliament

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

On the International Women’s Day, the 8th of March  MEP Interest Group on Brain, Mind and Pain and the Interest Group on Mental Health, Wellbeing and Brain Disorders have collaborated for the success of one joint event meant to analyse the European Pillar of Social Rights.

Several representatives of important stakeholders took part in this meetings at the European Parliament and exchanged ideas on the importance of the Commission’s initiative to come forward with a comprehensive Pillar on Social Rights.

Pain Alliance Europe Board Members participated to the event.DSC00290

Joop van Griensven (PAE) opened the event welcoming the participants and thanked all those involved in 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 the adoption of the Declaration by the European Parliament, this result is considered positive nevertheless. The work will continue as the Written Declaration will now become a Call to Action (#makeworkwork).

Dolores Gauci (GAMIAN-Europe) took over the chair, stating that her organisation warmly welcomes this initiative which will guide policies in a number of highly relevant fields which are essential for well-functioning and fair labour markets and welfare systems and is looking forward to the result of the analysis of the massive response  receives as a result of the 9-month public consultation, organised to take stock and gather the views of citizens and stakeholders on the subject (16.500 online submissions and 200 position papers)

Raquel Cortés Herrera (European Commission, DG EMPL) presented the rationale and content of the Social Pillar.DSC00105

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.

The geographical scope – the Pillar only targets Eurozone countries – has created unease amongst stakeholders as many respondents 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.

DSC00156Donna Walsh (European Federation of Neurological Associations)  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.

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 an early and accurate diagnosis as well as appropriate treatment and management.

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

DSC00184In 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

Katie Gallagher (European Patients’ Forum) introduced then her organisation and their point of view that all patients in the EU should have equitable access to high-quality, patient-centered health and social care.

EPF’s response to the Social Pillar Consultation emphasizes 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.

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.

DSC00116During the discussions, participants asked questions about the geographical scope of the Social Pillar and whether limiting it to the Eurozone will not create wider divisions between the countries and also on how the European Parliament can influence this movement towards a more social Europe as social policy remains the competence of the national level.

DSC00254

From left to right: Nessa Childers MEP, Dolores Gauci – GAMIAN, Marian Harkin MEP

In conclusion, Nessa Childers MEP  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 emphasizing that it is the responsibility of us all to ensure a social Europe in the future, where the voice of citizens counts.

EU News

European Medicines Agency

The European Medicines Agency Communication

The European Commission has published its report to the European Parliament and the Council on current shortcomings in the Summary of Product Characteristics (SmPC) and the package leaflet (PL) and how they could be improved in order to better meet the needs of patients and healthcare professionals.

The Commission engaged external contractors to produce two studies in order to provide supporting information for this report:

  1. Study on the PL and the SmPC for Human use to:
    • Assess the readability and comprehensibility of the SmPC and the PL as sources of information on prescription and non-prescription medicines for patients and healthcare professionals;
    • Assess the causes and (potential) consequences of identified shortcomings;
    • Recommend improvement of the SmPC and the PL of prescription and non-prescription medicines based on this assessment.
  2. Study on the feasibility and the value of a possible ‘key information section’ in patient information leaflets and SmPC of medicinal products for human use (‘PILS-BOX Study’) to:
    • Collect existing evidence on the potential impact of adding a key information section on the safety and efficacy of medicines’ use;
    • Assess the feasibility of adding a key information section in the context of the EU legislation;
    • Assess the potential cost/efficacy of adding key information in the context of the EU legislation.

The full report is available by clicking here.

Cluster Headache Day

PAE News

Cluster Headache Day– 21st March in European Parliament, Brussels

‘Arguably one of the worst pains known to man’

March 2017 – The European Headache Alliance (EHA) and European Headache Federation (EHF) announce the second ‘Cluster Headache Day’ event hosted by MEP Stevens on 21st March 2017.

Pain Alliance Europe is represented in this event by the President of the association, Mr. Joop van Griensven.

Cluster Headache (CH) affects up to 4 in 1,000 people, similar to the incidence of Multiple Sclerosis and Parkinson’s Disease. Despite this, CH is under-recognized and under-treated. It is a searing pain described as a red hot poker piercing through the eye when the patient cannot remain still or lie quietly in a darkened room. Unlike migraine, which is more prevalent in women, cluster headache mainly affects men. The word ‘cluster’ refers to a period of time lasting weeks or months. An increase in the number of attacks peak at the equinox and are associated with seasonal changes and daylight hours.

The European Parliament event hosted by Flemish MEP, Helga Stevens includes presentations on Cluster Headache from a policy, medical and patient perspective.

MEP Helga Stevens highlights that for all those affected by CH timely and accurate diagnosis and appropriate treatment are key for patients.

Kalina Tyminski and Miguel Ángel Pascual, both patients, will give personal testimony focusing on the real-life experience of coping with Cluster Headache highlighting the impact on education, family life and workplace in particular.

Prof. Paolo Martelletti, President of EHF says “Cluster Headache treatment is soon going to have a new pharmacological preventative CGRP-based class that will help this desperate pain state”

Prof. Dimos Mitsikostas, former President of EHF, states that more than 600,000 people in Europe live with Cluster Headache with less than 50% consulting a specialist and more than a third of sufferers missing work at a cost of 7bn euro per year.

Ms. Bianca Ferraiolo, from Active Citizenship Network says this important initiative puts CH patients at the center when addressing critical issues of this much-underestimated disorder.

Elena Ruiz de la Torre, President of EHA explains that the activities of Cluster Headache day would include both online and offline activities as part of EHA’s public awareness campaign.

For more details, please visit:

  • www.europeanheadachealliance.org
  • www.ehf-org.org/last-news/

Contact details:

Elena Ruiz de la Torre, European Headache Alliance President

Email: elena@europeanheadachealliance.org   Tel:  + 34 639 66 99 65

Francesca Romana Britti, European Headache Federation Secretariat

Email: info@ehf-org.org           Tel: +39 06 36010376 Ext. 205

The Red Balloon project and cooperation

PAE News

 

The Red Balloon project campaign has now continued over six months and it’s closer to the next summer’s Charity run at the SIP event in Malta. Social media includes thousands of pictures of people with balloons from all over the Europe.

redbaloon“With the campaign we want Europe wake up and seen the wideness of the chronic pain problems and difficulties it cause at personal and economical levels” says Pain Alliance Vice President Liisa Mikkonen. “From Europeans approximately 20 % suffers chronic pain but still it is invisible. Most of the patient’s think they have a reason stay quietly in shadows; shame, occupation sensitivity, afraid of position at work, family or stigma.”

The Red Balloon project is supported by the Boston Scientific to whom the chronic pain is one of the main aspects. They want to diminish problems related to chronic pain and the negative images of pain patients.

Technical Communications Manager Tim Rae from the Boston Scientific Clonmel factory explains: “Every year The Boston Scientific arranges sites around the world event called ‘Everyone Makes an Impact Day’. During EMAI Day groups of patients are invited to visit Boston Scientific and share their feedback of therapies. Often employees have a possibility meet the patients personally. EMAI days are excellent way to remind ourselves that making active implantable medical devices is a journey we take with our patients from the moment a device concept is born, through product development to manufacturing and implant.

Maintaining the connection between employees and the patients is one of the most important aspects of Boston Scientific’s corporate culture. Not only does it help to keep our employees engaged, but it also is critical to improve the quality of patient care. Events like EMAI Day continually remind us that each person’s job in the company has an impact to many thousands of lives around the world.”

Liisa Jutila, Vice-President of Pain Alliance Europe, agrees: “the patient’s connection to industry is meaningful. The connection with real patients makes a difference when we challenge industries scientific knowledge to be innovative in order to improve existing therapies and create new ones. The main word is cooperation.”

It’s inspiring find out how people want chronic pain to be seen and noticed. Liisa continues, “I was honoured be one of the Boston Scientific patient speakers. But I was even more honoured be invited to join the workers’ evening. People were genuine and real with their thoughts and questions of chronic pain. When they talked with us it was kind of way to their coworkers bring out their own pain and how it affects their work and life overall.”

PAE has put up national organisations to take the challenge. We encourage associations and active people connecting with industry, politicians, decisions makers and other patient associations rise up the problems related to chronic pain, in all aspects of life.

Getting together we are stronger and truly, everyone makes an impact.

 

Welcome

Newsletter PAE  2017 – Welcome!

Dear reader,

Ijoop-van-griensvenn this first newsletter of the year 2017 we would like to give you an update on what PAE and the board has been doing the past period and is planning to do the upcoming months.

Although you would expect that the holiday season would also be applicable for PAE and the board it didn’t feel like that. A lot of things were going on and several preparations / activities should have been started already.

The written declaration was one of it. The Societal Impact of Pain (SIP) Symposium to be held in June in Malta. The progress of the Red Balloon project. The Brain, Mind and Pain interest group. And last but not least our own survey. Then there is the annual general assembly and all the paperwork which is needed for that. More on all these topics you can read in this newsletter.

Discussions and meetings with partners in grant applications.  The preparations for the grant for patient centricity innovations. And off course the never ending story of finding the money for PAE’s activities. Besides that there is always the representation task of PAE in order to get more visibility, more recognition and inn that way more influence.

However we are not complaining  because actually we are very pleased that PAE is doing so well and ask to participate in or join in other activities. We will try to do that as much as possible if the activity is aimed to improve the quality of life of chronic pain patients across Europe. We do keep a wide scoop on that as there are so many areas which can be improved so that the people we are doing this for will get a better life.

But PAE is more as the board only. It are also national associations which are very active on their own national level and trying their best to get the situation improved in their own country. It is good to read about that in this newsletter as well.

We can all learn from each other and see and discuss if some solutions could work in other countries. We should not wait till others come with these ideas. We are creative and skilled enough for ourselves to do so. If we as patient associations set the example that by cooperation one can achieve so much than the other stakeholders will join and work with us, because if we reach our goals it would benefit them in the end as well. It is a win-win situation for everyone.

Enjoy the reading and don’t forget we do appreciate new ideas.

 Joop van Griensven

President PAE

SIP Symposium 2017, 7-9 June, Malta

PAE News

SIP Symposium 7 – 9 June 2017, Valleta, Malta.

The SIP Symposium will be organised during the Maltese presidency on June 8 and 9. On the 7th of June there will be some pre symposium events such as a workshop on patient advocacy given by GAfPA (Global Alliance for Patient Access) and the closing activity of the Red Balloon project. The SIP Symposium will have 4 workshops on the 8th.

  1. European and national platforms addressing the societal impact of pain
  2. Pain and employment
  3. Pain as a quality indicator for health systems
  4. Existing challenges, models and best practices in pain policy

On the Evening of the 8th there will be the Award ceremony of the “EU civic prize on chronic pain”

On the 9th there will be the two plenary sessions to present the outcomes of the workshops and some keynote presentations on the mentioned topics. Speakers will be high level governmental representatives of  Malta, Italy and Spain and high level representatives of EU institutions.

Find more details on the SIP flyer 2017

 On Friday evening we will have the G.A. of PAE.

 It is important that the members of PAE will attend these workshops and plenary sessions. Don’t let them speak about is with out us.

 As the voice of patients is very important to be included we urge you to register for this event.  If you are a representative to participate in the PAE General Assembly you will benefit of that arrangement.

Registration can be done by following this link; https://www.sip-platform.eu/news/details/SIPRegistration.html

Register as soon as possible as rooms and places to attend are limited. Read more on the SIP symposium; https://www.sip-platform.eu/

There will be pre-symposium and evening activities which could be interesting for you to attend as well.  We do hope to see you all in Malta.