MORE EXCLUSION FOR CATALAN CENTRAL SENSITIVITY SYNDROMES PATIENTS

[Kati]

This is seemingly a blog post that discusses the situation in one province of Spain.
i am particularily appalled by the naming of 'Central Sensitivity Syndrome" ( which is a terminology that is also used at the Vancouver clinic.

https://afectadasporlosrecortessani...talan-central-sensitivity-syndromes-patients/

(sorry I can't seem to be able to copy and paste this text from my ipad)

 

[barbc56]

How horrific. They've made it a catch 22 situation for patients. Banning Lyrica? I wonder if other medications are unavailable? While it didn't help me, it has helped others.

Outrageous!

Barb

 

[Effi]

On July 1st, 2015, the Health Department of the Catalan Government published a document, “Central Sensitivity Syndromes: Fibromyalgia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivities”. This document was written by a group of so called “experts” appointed by the Health Department, after several months of protests by CSS patients who had lost, over the last two years, the access they had to their specialist.

The lack of relevant medical services for patients with these illnesses in Catalonia has been denounced for decades (...) but the situation of these patients which are, according to the Catalan Government, 3.5% of the Catalan population, got even worse since 2013, when the majority of them lost the access they had to public health care.

This change was justified by the Government saying that they had to reorganize patients “by zones”. As a result, most patients, except those living in the immediate area of the only two ME/CFS Units (whose medical services can hardly be called that), were left with no doctor.

Most of the doctors in the Committee are specialists (mostly rheumatologists and 3 internal medicine specialists), the same ones that have been writing the Catalan government plans for these illnesses over the last 15 years and have also been seeing patients. These plans and medical care have consisted in using the 1994 Fukuda Criteria for CFS (which they still use) and recommend CBT. For fibromyalgia patients they have recommended the banned medication Lyrica and psychoeducational groups. And for Multiple Chemical Sensitivities, they have recommended nothing. There are no Environmental Medicine doctors in the Catalan Public Health Care System and MCS patients are left to their own devices with absolutely no medical care nor social services.

The main recommendations that the Committee of “Experts” Report makes are 3:
1.CSS patients should only be attended to in Primary Health Care
2.That the treatment for all of the Central Sensitivity Syndromes should be: a. CBT and b. “Exercise” (they do not specified if it should be GET, graded exercise, or just plain “exercise”).
3.That ME patients (they call it “CFS”) should be attended to by the following health professionals, in order of priority: 1. Psychologist, 2. Primary Health Care doctor (GP), 3. Physiotherapist, 4. Psychiatrist and 5. Primary Health Care Nurse.

Needless to say that if this report and recommendations were made about any other similar illnesses (Multiple Sclerosis, Lupus, etc), there would be a major outcry. But most CSS patients in Catalonia are too ill to protest and are afraid to do so as they are constantly harassed by the Medical Inspection Board.

A recent investigation by lawyers – Ronda Lawyer’s Coop- and journalists – Sentit Critic- this year has shown that the Catalan Medical Inspection Board is targeting CSS patients: taking away their pensions and refusing them sick leave and pensions. And that the inspectors are payed a premium for taking pensions away from CSS patients who had been given them by a judge’s ruling after a long and costly court case.

Appalling!! The worst thing about this is, no matter how much patients are abused by their government, they are too sick to fight back. It's simply inhumane.