Goed nieuws uit Spanje, uit CataloniŽ om precies te zijn.
Daar werd op 21 mei met unanieme stemmen een petitie aangenomen
waardoor enkele belangrijke basisvoorzieningen gerealiseerd worden
voor CVS- en fibromyalgiepatiŽnten in CataloniŽ, zoals onder meer:
- 11 klinieken met echte multidisciplinaire teams van medisch specialisten,
- 3 van die klinieken zijn tevens centra voor wetenschappelijk onderzoek,
- patiŽnten worden daadwerkelijk betrokken bij de opzet van de centra,
- scholing van dokters en medisch inspekteursonderzoekscentra.
Belangrijk argument in de diskussie: een kleine 140.00 handtekeningen.
Omdat de Catalaanse minister van Volksgezondheid zich hardnekkig blijft verzetten
(merkwaardig, maar gezien de macht van de biopsychosociale school niet zo vreemd),
is de strijd nog lang niet gestreden. Maar de eerste grote slag is gewonnen...
A FIRST VICTORY IN CATALONIA, SPAIN, BUT WE CONTINUE...
By Clara Valverde
On May 21, 2008, after a year and a half of hard work,
the Catalan CFS/ME and FMS associations reached their first big
victory: a Parliamentary Resolution voted by unanimity to organize
health services for people with these illnesses. This unanimous vote
was only possible because the associations had gathered in 2007
almost 140,000 signatures as part of a Legislative Initiative (for
which only 50,000 signatures were necessary).
The process has been a very hard one with, not only the signature
gathering, but countless meetings with politicians, associations and
organizations, writing documents, educating, press work, etc.
The negotiations with the government have been very, very rough,
nasty and intense until the last minute. They were not going to
accept the demands as a law but we managed to get them all accepted
as a Resolution. A law would have been more binding but it would
never have passed. This Parliamentary Resolution has the advantage of
having been voted unanimously by all parliamentarians and with full
press coverage (live on television on real time), which will make it
harder for the government to back down.
It was an exciting day: the Legislative Promoting Commission (half a
dozen of us from various CFS/ME and FMS associations who were
leading this initiative) was in the Parliament and we presented our
demands. That was followed by presentations by all the parliamentary
groups and then the vote. And a standing ovation. Outside the
Parliament Building there were almost a thousand people, mostly women
with CFS/ME or FMS with sings, singing, cheering and celebrating.
These are the main points that the Resolution covers:
- The setting up 11 CFS/ME-FMS specialized units with three of them being research units also (right now there is one that is operating but it has a 3 year waiting list)
- These units will have multidisciplinary teams (internal medicine, rheumatology, neurology, etc and even pediatricians)
- Waiting lists cannot be longer than 90 days to access a unit (a big change from 3 years)
- Doctors will be trained about CFS/ME-FMS (international specialists will probably have to be invited for this)
- Medical inspectors will be trained on these illnesses
- The follow-up of the setting up of these services will be done by a joint committee in which patientsí associations will be represented
Needless to say that the Catalan Minister of Health, Marina Geli, is not so happy
about having to carry this out and she said so on the govermentís home page the same day it was voted in Parlament
(this would require a long explanation about Catalonia, Spain, and many anthropological concepts...).
So, the associations are not taking a break nor taking the time to
celebrate this victory because we know we cannot afford to slack. We
have to keep a good watch on what the goverment is doing and not doing.
So, we are back at work doing the following:
- Educating patients and their associations to all be watch-dogs and to report on the implementation
of this resolution in their area: we are teaching people how to file proper complaints that can be used in a legal case if need be.
- Making sure that all patients know the content of the Resolution.
To make this easier, we have written a song with all the main points to the tune of ďYes We CanĒ (thank you, Obama), so that people can remember it.
- Working with a law firm, Collectiu Ronda, to do a proper and constant follow-up and to gather evidence
in case the resolution is not carried out properly. In that case, the law firm will do a colective law suit against the goverment.
- Going back to the press about how we are still on the ďwar pathĒ
until we make sure this Resolution is respected and carried out.
This last year and a half has been decisive for the CFS/ME-FMS movement in Catalonia:
- The associations have joined force
- 140,000 people have been educated one by one, by our 150 signature gatherers
- Parlament has spent much time talking and arguing about the issue of services for
CFS/ME-FMS (one parlamentarian told us that they had never talked so much about any issue before)
- The Catalan Health Deparment has been challenged like never before by civil society and they now know that we are a force to be reckoned with
- There has been an enormous rise in consciousness amongst people with CFS/ME-FMS in Catalonia
- We are a lot less invisible now!
- And we are on our way to getting proper health care services (although much work is still to be done).
We have had a lot of help and support from people, associations and experts in other countries
and so to all of you we want to say a big GRACIAS!