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.

 

 

 

International Happiness Day

Member News

Chronic Pain Patients Association in Azores

In the ADDCA, Chronic Pain Patients Association in Azores, it is usual to celebrate important dates such as international days and regional days, as Friends Day and Carnival.

International Happiness DayOn International Happiness Day, the 20th March, together with 5 other associations, we gathered 120 people; they made games, laughter therapy, embrace of happiness, and a shared snack came to complete a relaxed atmosphere.

It was a very happy day.

Carnival @ the ADDCA

Member News

ADDCA – Chronic Pain Patients Association in Azores

To mark and celebrate the Carnival, the ADDCA (Chronic Pain Patients Association in Azores) held a party on February 25 where users and partners gave wings to their imagination and made of that moment a memorable “day”.

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To enter the carnival spirit, the association’s members began days before, to create and decorate carnival masks using the most diverse materials which would later adorn the space of the association. And they did not stop there: even the party had the imprint of the association, they tried to make a carnival costume for the Cultural Partner Cheerleader who disguised herself as Cleopatra at the hands of the ladies who give life to that association.

In addition to a lot of music and dancing, plenty of traditional «malassadas» snacks were eaten, and to the sound of the samba and other more Portuguese ballads people ate and exchanged life stories.

And as a picture is worth a thousand words I invite you to take a look at the photographic report.20170225_15435520170225_154809

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ADDCA’s Open Days

Member News

ADDCA – Chronic Pain Patients Association in Azores

The ADDCA (Chronic Pain Patients Association in Azores) held the first of four ‘public open days’ on Saturday, the 25th March.  These are to talk about chronic pain: how to cope with it and even to prevent it.

17474101_306463669772555_747195170_o 17505820_306464483105807_1675546446_nThe presentation by the pain medicine physician focused on the definition of pain, the mechanisms that make chronic pain appear and remain longer than three months, the differences between acute pain and chronic pain, and pain as a disease. It was also explained how the person with pain is evaluated, the individual factors that can influence behaviours resulting from this chronic situation.

The psychologist also talked about the strategies used to help patients deal with pain, giving them tools with which he can reduce the influence of his emotions, thoughts and behaviours in the amplification of pain.

During the meeting, at which there were present around two dozen people, testimonies were given and discussions were held on how patients can access pain treatments.

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.

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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.

Meeting in the Parliament 12 April – ENFA Action

Member News
European Network of Fibromyalgia Associations (ENFA)

 

ENFA event April 12 2017 groupOn April 12th, the European Network of Fibromyalgia Associations (ENFA) organised “The position of the fibromyalgia patient in society” event in the European Parliament, hosted by Member of the European Parliament (MEP) Takis Hadjigeorgiou.

 

The meeting was opened by a video message from the MEP Takis Hadjigeorgiou who, because of other obligations, has not been able to attend.  ENFA event April 12 2017 Souzi presentThe meeting chaired by Souzi Makri, president of ENFA, started with a short introduction on what fibromyalgia is, followed by a presentation by Joop van Griensven, treasurer of ENFA, on the history and achievements of ENFA from the beginning of the organisation.

A Dutch awareness video has been presented, which told the story of a woman with fibromyalgia and her journey to achieve a meaningful life after the diagnosis. The video was subtitled in English and 9 different languages are actually available in subtitles, due to the much appreciated contribution of Grünenthal who intervened with a restricted grant in this project. More info on how to achieve a copy of the video can be found on the website of ENFA www.enfa-europe.eu

Rinie Geenen then treated the subject of the social consequences of fibromyalgia presenting new research data about invalidation of fibromyalgia and more specifically, on the differences shown in that research between different European countries. Strangely enough, the situation in the U.K. seemed to be worse than one might expect, considering their well-respected healthcare system.

Donna Walsh explained in her presentation the relation between Fibromyalgia and the Brain, Mind and Pain interest group, and particularly in relation with the written declaration and the call to action #makeworkwork.

The last presentation came from Steven Bevan and highlighted the relation between work and fibromyalgia. He emphasized that patient associations should make more work in addressing employers to keep people with fibromyalgia employed, as all the research show that working is improving the health condition of Fibromyalgia patients. However, this should be achieved by addressing the patients individually as no patient is the same. All presentations and the video were starting points for long discussions on all the issues ENFA is struggling with for years, the result of the debate being meant to help EFNA developing new targets to address in achieving their goals.

The presentations of the speakers together with some pictures can be found on the website www.enfa-europe.eu

Airing Pain

Member News
Pain Concern – UK

 

Pain Concern produces Airing Pain, an online radio show also available on CD. Airing Pain brings together people with chronic pain and top specialists to talk about the resources which can help.

shutterstock_507302314-podcastAiring Pain is an invaluable resource for those living with chronic pain, their families, friends, carers, supporters, employers and health professionals. All resources are certified by the Information Standard, with some of Pain Concern leaflets and packs also being used by NHS Scotland.

 

Latest programmes

After receiving funding from the Women’s Fund for Scotland, we recently produced two radio programmes focusing on female genitourinary and pelvic pain; a subject which, despite affecting around 1 in 7 women at some point during their lifetime, still remains taboo for many in the healthcare and wider communities.

These programmes focus specifically on two of the most commonly diagnosed causes of this pain: vulvodynia and interstitial cystitis (aka ‘painful bladder syndrome’ or simply ‘chronic bladder pain‘). The podcasts contain interviews with specialists and people living with these conditions, who share their patient journeys from diagnosis to the present day as well as offering advice on pain management.

Both programmes are now available to listen on demand as a free podcast via (ctrl+click to open in a new tab) the Pain Concern website, Audioboom, Able Radio and most podcast apps.
https://audioboom.com/posts/5705568-88-chronic-bladder-pain-interstitial-cystitis
https://audioboom.com/posts/5605599-87-vulvodynia

You can listen to Airing Pain fortnightly on Tuesdays at 8 pm GMT via www.ableradio.com. Podcasts are then available to listen here and on Pain Concern website. Subscribe to the Airing Pain podcast on iTunes and through most podcast apps.

Pain Concern is also present on Twitter (@painconcern) and Facebook, so if you’re on social media please feel free to check out and share any posts you think your followers would find particularly helpful or interesting.

The full catalogue of all Airing Pain programmes for the past 8 series can be found via Pain Concern’s website: www.painconcern.org.uk

Airing Pain has covered a vast array of in-depth topics – migraine, cancer pain, PTSD for war veterans, endometriosis and FGM, to name but a few – and over the next few months dementia, back pain, gout and horticultural therapy will be added to the ever expanding list.