Is this the end for the Belgian CFS reference centers?

by Johan on March 15, 2012

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?

Klik hier voor de Nederlandse versie van dit artikel:”Is dit het einde voor de Belgische CVS-referentiecentra?”

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.

Now what?

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.

The contrast

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.

Counterattack

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.

Indolence

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.”

A 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.

Conclusion

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.
George Orwell

Sources

Sorry, but all sources are from Dutch papers.

{ 9 comments… read them below or add one }

Jack March 16, 2012 at 12:38 pm

Excellent coverage as usual Johan. Thought provoking as ever.

I remain uncertain but am pretty sure that here in the UK we have no such thing as evaluations of what remains of our ‘specialist’ centres. Almost wish we did. Although the evaluations would have to be independent of course – but that may well happen with the advent of greater GP control.

Not that I am suggesting closure outright of course – especially if it leads to the Government pocketing the perceived savings. What concerns me (one of the things) is that Government here – in light of the Health and Social Care bill – are increasingly burdening patients with the perception that they have control of (or can contribute to) decision-making.

I worry that the ‘third sector’ are becoming abused by a lack of Government willingness to adequately support healthcare effectively. Rather than listen to patients and their experts and make appropriate improvements to care – they appear to now be saying – ‘You take the responsibility. You get on an raise the money. We think that’s a great idea. You are the experts.’

They are increasingly shifting the burden of responsibility. Patient involvement is fine. Commendable even. But only if the patient is capable of shouldering the burden, and only if the patient’s views are listened to, and only if the patient is given some teeth.

Specialist centres pursuing the ‘psycho-social’ approach might be seen to be ineffective – question is – ‘What’s the alternative?’ Not that I am suggesting there isn’t one.

But I am suggesting that if all the perceived savings from closure were pumped into ‘biomedical research’ you’d better be sure that the research was worthy, because patients will be left with nothing, and for how long? And what research?

Over here, GP’s will be given the control of budgets. Afforded the public purse. If patients are saying the specialist centres are not worth supporting, GP’s will put the money into other conditions. GP’s don’t fund research.

Reply

Johan March 16, 2012 at 5:11 pm

@Jack,

I believe the biopsychosocial way of thinking is so deeply ingrained in the current CFS centers and the people who work there, that it is impossible to turn them around. That there is no biomedical treatment available, does not mean that there aren’t better ways to spend the money.

I can’t recall specific examples, but I think there are precedents where patients have a say in the decision-making (priorities, …). I do remember reading an article about the board of directors in hospitals, it said that every interest group had a seat, except patients. In the case of ME/CFS, it means that patients would have to agree on some topics.

“Worthy” research. This disease still requires a lot of fundamental research. You cannot make sure it is gonna be worth it beforehand. That’s the thing with fundamental research.

A lot of interest groups have a say on how to spend the health budget. I would not mind for GPs to have a (greater) say in that, if they don’t already, but control no. GPs don’t fund research, that is right. Why should they? Healthcare and research are 2 different things and each should have it’s own budget.

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Jack March 17, 2012 at 12:13 pm

Indeed. My concern is (and there are similar moves afoot among some patient in the UK – a petition – to have our ‘specialist’ centres closed and funds re-allocated to research) that we would have no control over said research. And how does one define research that is even ‘fundamental’? Or ‘worthy’? You know how it goes. Whenever a paper is published there is always a patient or patient ‘group’ that says it shouldn’t have been done or it is not that they would have spent the money on.
With (other) neurological conditions whose cause is (or is not) known, health-care is all about ‘rehabilitation’ or learning/engaging in multi-disciplinary care. I would say ‘rehabilitation’ means learning how better to manage one’s condition.
Even if one believes that e.g. GET is something to be avoided for ME patients because such practices even though there are prescribed for other conditions, are ineffective (dare I say dangerous) because ME is unique in this regard; I believe there are things that can be done to ‘restructure/reform’ said ‘CFS Centres’.
I don’t think that closing said centres in the UK (I have no knowledge of Belgium), is a viable/worthwhile strategy. But reform certainly is.
Against a background of inadequate healthcare for any long-term neurological condition, then better targeted care and support is needed and can be achieved. For example, recruiting and training clinical leads is a must and a priority. However, the provision of neurologists (not to mention immunologists) to lead centres for long-term conditions appears an endemic problem. I don’t think ‘we’ are alone in this lack.
MS and Parkinson’s for example, might get to see a neurologist by way of referral from a GP for a second opinion and drug prescription etc. but not all do and not all get to see said specialist all of the time for follow-up.
If they are ‘lucky’ their long-term care is handled by specialist nurses (who are few and far between and often sponsored by Charities).
Even where a Neuro-Rehabilitation service is in existence e.g. Bolton such provision is unique.
There is a lot of overlap between the involvement of multi-disciplinary practitioners across the range of Neurological conditions but no central organisation or provision.
I guess my point is that the whole field is a mess but ME has the added dilemma of not always being accepted as part of the Neurological picture. However, repeated statements from our Department of Health have gone some way to allay these memes. But what is still lacking is the willingness of Neurologists to engage in long-term care. And maybe – in the case of ME – we should be looking at combining Neurology with Immunology and having them at clinical leads.
So reform not removal? Reform would take more investment that’s for sure. I don’t know. It’s a very thought provoking thread Johan. Thanks.

Reply

Johan March 17, 2012 at 5:05 pm

@Jack,
Thanks. I am normally a reduce/reuse/recycle type of guy, so my initial reaction to the CFS centers would be to keep the structure intact and replace the board and psychiatrists (reform). However the biopsychosocial model for CFS (as the only model) is so ingrained in the way of thinking of the people who work there or come into contact with the center (even medical specialists) that I doubt that a reform is even possible.

If we would want a CFIDS type of organization in Europe and be able to fund research-projects and conferences ourselves then we would have to make decisions about huge sums of money for research that might or might not pay off. Maybe we are not ready for that. You cannot please everyone. But that is a different topic.

I do not know enough about the care of other neurological diseases to comment on that.

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Derek Enlander March 16, 2012 at 1:51 pm

I spoke a t the House of Lords in London last week at the invitation of The Countess of Mars, our great champion. I countered the nation of GET as the effective treatment of ME/CFS. In fact in many cases GET further disables patients.
The ME/CFS Center in the Mount Sinai Medical School , New York has been set up with a kind donation of one million dollars by one of my patients.
We are offering to jointly participate with the UK government in setting up two fellowships to train two post doctoral fellows in ME/CFS diagnosis and treatment in New York for one year. The UK government would underwrite the living expense of fellow and Sinai would underwrite the tuition and their research opportunity .
If the fellowships are favorably reviewed we will renew the fellowships to two new applicants the following year.

Reply

Johan March 16, 2012 at 5:13 pm

@Derek,

Thanks. That is a great initiative.

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Jack March 17, 2012 at 11:51 am

Indeed it does sound a great initiative. I haven’t heard too much about your meeting Dr Enlander. We are awaiting the minutes I believe. The lecture you gave in Northern Ireland will also be made available soon on DVD. I look forward to reading/viewing both.

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Jack March 20, 2012 at 10:21 pm

Interesting news from Sweden. I guess it all depends on a) one’s definition of a ‘specialist clinic’ and, b) who’s doing the defining. And many other factors besides.

‘The first Establishment of specialist ME / CFS clinics in each county that can provide diagnostic, counseling, symptom-relieving treatment, and follow international biomedical research.’

http://translate.google.se/translate?u=http%3A%2F%2Fwww.svd.se%2Fopinion%2Fbrannpunkt%2Fen-vardskandal-i-det-tysta_6938371.svd&sl=sv&tl=en&hl&ie=UTF-8

Reply

Johan March 30, 2012 at 9:32 am

@Jack,
It is good to see that things are set in motion.

Reply

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