Enhancement of the patient's rights to avoid pain!
From local to global: the role of the Sine Dolore World Park to enhance the patient's rights to avoid pain through the EU network of manager of good practices on chronic pain
The recent presentation at the European Parliament of the Spanish experience "Sine Dolore World Park", which took place on April 26th thanks to the support of the MEP Rosa Estaràs Ferragut and the collaboration of Active Citizenship Network, represents at the same time a point of arrival and a point of departure for the organizers of the Sine Dolore European Pain Foundation, in particular for “the deus ex machina” Prof. Jordi Moya, to whom the merit of having always believed in this initiative, even in spite of those who have hastily rejected it as: “very nice initiative, made in a beautiful place, but in a context that is too small that has no impact”.
Personally, I do not believe that an initiative carried out far from the main European capitals and more generally from the buildings of the Institutions can not have an impact on public policies and, ultimately, on the conditions of many citizens. There are many examples of praiseworthy initiatives far from the spotlight but capable of bringing benefit to the community, capable of having a positive impact on the care of common goods because they are oriented towards the general interest. For this to happen, it needs a great civic sensitivity by the promoters, but also a support from public and private subjects who believe in it and invest in that specific initiative. This is the case, for example, to remain in the health sector, of the European Health Forum Gastein, hosted by Bad Hofgastein, an Austrian municipality of about 7,000 inhabitants nestled in a fantastic landscape context.
Menorca with its Sine Dolore World Park, on chronic pain, can potentially represent at European level what Bad Hofgastein represents on health policies in general, with his European Health Forum Gastein. It is a challenge and a wish at the same time.
Of course, it depends first of all by the decision of the promoter to continue on it without any auto referential approach, but also it will depend how much public and private bodies want to invest and support it.
Active Citizenship Network has decided to support it not only because it addresses a subject dear to us, the right of patients to avoid pain and suffering, but above all because we have found in Menorca, during the week of the Sine Dolore World Park (SDWP), a context with a soul, a strong sensitivity and a widespread civic participation - which is in line with our nature and our history of civic association.
It is certainly a matter of pride to be able to present SDWP to the European Parliament, in front of European institutions and many relevant stakeholders. But I hope that this passage can be seen as a starting point and not a destination for a commitment at the supranational level of the SDWP, the unique theme park in the world against pain and for the quality of life, in terms of addue value and peculiarity, that this initiative can offer to the chronic pain constituency.
The potential is truly remarkable. Indeed:
At national level, I think SDWP could represent the perfect context where to promote the Spanish version of the "Societal Impact of Pain" (SIP), it means a multi-stakeholder platform able to provide opportunities for discussion for health care professionals, pain advocacy groups, politicians, healthcare insurance providers, representatives of health authorities, regulators and budget holders. I encourage Sine Dolore European Pain Foundation to play an active role on it, in accordance with the promoters of SIP, of course.
At EU level, we believe that the online platform provided by EU Commission "The Societal Impact of Pain Thematic Network" is a very commendable initiatives to share best practices and develop policy recommendations, but is not enough because it doesn’t facilitate any face to face meeting.
For this reason, and more in general – with the aim to contribute to make the invisible visible on chronic pain - my organization and the Sine Dolore European Pain Foundation have promoted a joint initiative called “Pain Euro-Mediterranean Coalition”, that is neither a new association nor an EU umbrella organisation, but the first civic incubator of best practices against pain across Europe, an informal network composed by manager concretely engaged to carry out good practices across Europe. And the SDWP is the context where meet each other, share experiences, promote initiatives in other context.
The first enthusiastic actors who have decided to join the Coalition are advocacy groups & patients organization coming from EU Member States of Portugal, Spain, France, Italy, Croatia, Malta, Bulgaria and – outside EU -, from Kosovo, Albania and Switzerland.
With them, the Coalition take advantages from other two very relevant components: from one hand, the experts that each year attend the Annual Pain Meeting, organized in Menorca by the Sine Dolore European Pain Foundation. From other hand, the managers that carry out good practices selected by an international jury of experts in the context of the bi-annual research-project called “EU Civic Prize on Chronic Pain - Collection of good practices”, the initiative promoted since 2015 by Active Citizenship Network at EU level with the aim to give evidence on existing good practices in terms of struggle against pain.
With the title “Making visible the invisible on Chronic Pain: sharing successful experiences from Spain to Europe”, last 6th May 2018 in Menorca it was successfully celebrated the first Annual Meeting of the “Pain Euro-Mediterranean Coalition”, an occasion to share best practices at EU level and put the premises to develop policy recommendations at national level thanks the great participation of Spanish advocacy groups dealing with the topic. Most of them were involved last June 26th for the kick-off meeting of the incoming SIP Spanish.
It is strongly believed the EU network of manager of good practices on chronic pain could represent a way to reduce the impact of chronic pain in Europe by ensuring that the right to avoid unnecessary suffering and pain (11th Right in the EU Charter of Patient Rights) could be recognized, guaranteed and respected everywhere and to everyone.
The program and presentations of the Event con be found here.
Mariano Votta - Director of Active Citizenship Network