Game over for the reference centers for CFS (chronic fatigue syndrome) in Belgium, where proponents of the biopsychosocial model held sway for 10 years. By the end of this year the 5 centers situated in university hospitals in Leuven, Ghent, Antwerp, Louvain-La-Neuve, and Brussels will have to close their doors as decided by the National Institute for Health and Disability Insurance (NIHDI). That was the big news on Friday, March 9 2012. Patients rejoiced. Until the Health Minister, Laurette Onkelinx, cast her veto against the closure on Tuesday, March 13 2012. Back to square one?
Why close the centers?
- Nothing but negative evaluations
- No results for the treatment with cognitive behavioral therapy and exercise therapy
- The centers did not bother to involve the first (GPs) or second line (specialists) in the treatment of the patients
- The centers refused to share their knowledge with general practitioners (GPs)
- The centers did not, or did so insufficiently, grasp their last chance to create consortia with associations of general practitioners.
Multidisciplinary care was one of the key tasks for the CFS centers, but during the ten years of their existence they kept the knowledge within the walls of the CFS centers and stuck to cognitive behavioral therapy and exercise therapy.
Where patients will have to go to next, is not entirely clear. According to a spokesperson for NIHDI, CFS patients can always go to the centers for mental healthcare for behavioral therapy or to physiotherapists for exercise therapy. Strange reaction after they have come to the conclusion that it doesn’t work.
There are no plans to invest the amount of money now saved, 1.6 to 1.7 million euro a year, into biomedical research or treatment in 2013 — it is considered to be a saving. Just to make this absolutely clear, NIHDI specifically stated that budget cuts were not the reason for closing down the centers, but because they failed in their mission.
No results, repeated negative evaluations, refusing to perform their (key) tasks, ignoring the recommendations from NIHDI, for 10 years. The result: the centers will have to close their doors, but those responsible remain untouched: no blame or sanction and no fine. The contrast with the 2 doctors who were persecuted because they were treating their patients biomedically, can not be bigger, they risked losing their medical license and a fine of €635,000.
The publication of the article that the centers will have to close their doors by the end of 2012 in the “Artsenkrant”, a medical gazette, provoked an immediate response from the the President of the CFS-network for East-and West-Flanders, Prof. Dr. Dirk Vogelaers. His reaction appeared the same day in the (online) version of the newspapers “De Standaard”, “De Morgen” and “Het Laatste Nieuws”.
- Despite repeated warnings about closure (at least since 2008), the actual closure came out of the blue for Dirk Vogelaers.
- Despite the negative evaluations and the lack of results, the closure endangers, at least according to Vogelaers, the “scientifically correct and verifiable care”.
- He blames the closures on austerity measures.
- He worries about the fate of the patients.
Suddenly, it’s about the patients, 10 years and 15 million euros too late.
The first negative evaluation covers the period 2002 – 2004, the following evaluations were negative, the KCE report in 2008 was negative and they ignored the recommendations of NIHDI during all that time.
The evaluations were negative not only because they did not involve general practitioners and medical specialists (other than psychiatrists) in the treatment of CFS patients, but also because the treatment failed to deliver, for example the rate of employment decreased after treatment.
During all that time, Prof. Dr. Boudewijn Van Houdenhove, the Belgian Simon Wessely, continued to promote the biopsychosocial model in the media. No journalist ever questioned what he said. No journalist ever inquired at NIHDI to check the professor’s story. Even now, with the press release by Dirk Vogelaers, which was copy/pasted by the media, no questions were asked, while he did not address the real reasons for the closure.
That bothers me, the indolence of the media.
Ten years and one and a half million euro per year to sustain a belief system. “Madam, Sir, it is all between the ears of the patient. You can believe us, we are professors and wear white coats.”
divine ministerial intervention
It seemed like a dream, the hope for a new beginning … until the Minister of Social Affairs and Health, Laurette Onkelinx (Socialist Party), cast
a curse her veto against the closure.
Paul Callewaerts, a representative of the socialist health insurance fund, defends the veto: “We agree that the centers do not comply with the agreements, but you cannot just abandon the patients. We have to create a customized and multidisciplinary care for patients with such complex disorders. And more research is needed to get to the bottom of CFS.”
Un-be-liev-a-ble. Multidisciplinary care and research were among key tasks for the reference centers, but during those 10 years they turned it into psychiatric members-only club (monoculture), they dropped the ball. The continuation of 10 years of mismanagement is not in the best interest of the patients, nor in the interest of the taxpayers.
Chris Van Hul, from the independent health insurance fund (“Onafhankelijk Ziekenfonds”), regrets the veto of the Minister and endorses the decision of NIHDI to close the CFS centers because they never did what was expected from them and he stresses that the economic context (austerity measures) did not play a role in the decision.
Blame it on the GPs
Apparently a reason for the Health Minister’s veto was that someone told her that no GPs were found who wanted to cooperate with the CFS centers. Working with GPs was one of the key tasks of the reference centers. That they did not do this was one of the main reasons for the repeated negative evaluations. In a last chance for reference centers to save themselves, NIHDI advised them in 2009 to found consortia all over the country in a partnership with local general practitioner’s associations and hospitals. Mid September 2011 the “Artsenkrant, a medical gazette, published an article in which this was mentioned and that general practitioner’s association had until the end of October 2011 to found those consortia and submit an action plan for the treatment of CFS patients. Several patients, including me, asked their doctors about this. The article in the medical gazette was the first they and their local association heard about it. Given the many questions that this raises (Who should do what? Who pays for it? What treatments?), the lack of any official information and the short time-frame, it is no wonder that this thankless job wasn’t met with enthusiasm. The reference centers should not blame this fiasco on the GPs.
Given their track record it is highly unlikely that the CFS centers can be turned around. Just ask NIHDI, after 10 years of negative evaluations, reminders, recommendations and last chances, it appears that all the centers did was ignore them.
Time for something completely different and better: new centers with new people and with patients in the board of directors.
To be continued …
|Early in life I had noticed that no event is ever correctly reported in a newspaper.|
Sorry, but all sources are from Dutch papers.
- Artsenkrant 09/03/2012: Geldkraan dicht voor referentiecentra CVS
- Het Laatste Nieuws 09/03/2012: Overheid laat CVS-patiënten stikken
- De Standaard 09/03/2012: Overheid laat CVS-patiënten in kou staan
- De Morgen 09/03/2012: Overheid laat CVS-patiënten stikken
- De Standaard 10/03/2012: Chronisch moe en zonder hulp
- deredactie.be 14/03/2012: Blijft behandeling CVS-centra toch terugbetaald?
- Het Nieuwsblad 13/03/2012: Onkelinx redt CVS-centra
- De Standaard 13/03/2012: Veto Onkelinx redt CVS-centra
- Artsenkrant 13/03/2012: CVS-centra waren gewaarschuwd
- Onafhankelijk Ziekenfonds 13/03/2012: Veto Onkelinx: een betreurenswaardige eenzijdige beslissing
- KCE Chronisch Vermoeidheidssyndroom 30-09-2008: zorgverleners moeten meer samenwerken