Catalan Government Leaves CFS/ME/FMS Patients High and Dry

From the FMS Global New Desk (UK)

by Jeanne Hambleton  Copyright 2009 All Rights Reserved


I need your help again please  –  but this time BIG TIME!

In November 2007 I wrote two stories about the people of Catalonian Spain who have CFS/ME/FMS and their efforts to get recognition from their Government for their problems and health.  It was truly a story of courage and dedication. After years of badgering, lobbying, calling in favours  and protesting, they managed to a get Bill before their Catalan Parliament.

To make sure everybody was counted the Catalonians took pictures of faces, pasted to card on sticks to their protests. These faces represented the people who were too ill to leave their beds  to support the cause,so they were there in spirit,  so to speak.

In May 2008 Clara Valdverde declared the first victory with the Catalan  Parlament. After  a year and a half of hard work by the Catalan CFS/ME and FMS associations  a Parlamentary 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).

Clara said 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 and press work.

The negotiations with the goverment 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 Parlamentary Resolution has the advantage of having been voted unanimously by all parlamentarians and with full press coverage (live on television on real time), which will make it harder for the goverment to back down.

Barcelona May 21, 2008, and Clara decided it was an exciting day.  She wrote, “The Legislative Promoting Commission (half a dozen of us from various CFS/ME and FMS associations who were leading this initiative) was in the Parlament and we presented our demands. That was followed by presentations by all the parlamentary groups and then the vote. And a standing ovation. Outside the Parlament Building there were almost a thousand people, mostly women with CFS/ME or FMS  singing, cheering and celebrating.

         These are the main points that the Resolution covers:

       The setting up 11 CFS/ME-FMS especialized 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 patients’ associations will be represented


 The Catalan Minister of Health, Marina Geli, was not so happy about having to carry this out and she said so on the goverment’s 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 or 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 “Yes We Can” (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 “war path” 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 forces

       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!

 

AND THEN…..

Of course we were all delighted with the success of Clara and her team of supporters. We held the Catalan Parlament up as a shining example to the world.  We said if Catalan can do this for these patients who live with pain 24/7, through not fault of their own,  then the rest of the world should be able to do the same.

HOW WRONG WE ALL WERE!

It would seem the Catalan  Parlament has welched  ( big time) on its deal with  the CFS/ME and Fibromyalgia Associations.

BAD NEWS

This week I  had  bad news from Clara who was the driving force behind all this activity in Catalonia.   She wrote

“Dear Friends and Colleagues,

Just one month before the Catalan government (Spain) is supposed to have accomplished the setting up of new CFS\ME and FMS units as it was voted unanimously by the Catalan Parliament a year ago, we have found out that they plan a counter attack which consists of making CFS\ME\FMS units disappear. They have stopped all doctor’s training on CFS/ME and FMS, and have ordered CFS/ME specialists to not give disability status to any patients. They also have other ideas up their sleeve, including joining CFS/ME with certain psychiatric conditions and medicating them so.

This is a major set back.

We need help from all of you all over the world.

Please write to the four people in the government who are responsible for this:

The minister of health of Catalonia, Consellera Geli  <consellera.salut@gencat.cat>

The member of parliament of the ruling party in charge of health, Dr Caterina Mieras <caterina.mieras@parlament.cat>

The two adminstrators in charge of the plan:

Dr Josep Argimon <jargimon@catsalut.net>

Dr Maria Luisa de la Puente <mlpuente@catsalut.net>

With a copy to us: <info@ligasfc.org>

We will keep you informed and thank you for your help,

Clara Valverde – President, Liga SFC (Spain)


 EPILOGUE

If you think the Catalonian people with FMS and CFS/ME have been badly let down by this u turn, please help these unfortunate  people and write emails of support to the four addresses Clara lists.

I must say if the situation was reversed and we had been promised all these changes ( yes I know and pigs might fly) I would be asking Clara and her members to support us.  We should accept that we are  all part of the  Fibromyalgia Family  (it is us and the normals) and as such, we must stick together if we are to raise awareness and hope to get any funding for research to find a cure. Have you written to your MP urging him to press on your behalf for funding for research for a cure? I supposed you do want to be cured?

 

Who is your MP? Log on  to http://www.theyworkforyou.com/  put in your post code and hey presto – you can even write from that site – you do not even have to find a stamp or walk to the post box.

If you are looking for more background on this story look at the original stories

Nov.5 2007

 

FOR MORE STORIES ON HEALTH  SEE    http://fmsglobalnews.wordpress.com 

 


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