International FM Community
The Danish public authorities, including the Ministry of Social Affairs (which handles social security), are mainly financed by income taxes, although the private insurance field is growing and private hospitals do offer services to paying patients.
At this point, fibromyalgia is still a diagnosis that causes doubt within the health field. It is not a formalized part of medical education, as doctors are unable to agree whether or not it is a genuine physical diagnosis. The general practitioners who believe in fibromyalgia are few and far between.
Psychiatrists claim that fibromyalgia is a somatization syndrome, thus ignoring the World Health Organization’s ICD-10 criteria, where it is clearly stated that fibromyalgia is an independent diagnosis that excludes psychogenic causes.
An unfortunate combination of skeptical general practitioners and few specialists who can undertake the proper examination leads to waiting lists of between nine months and 1H years. Furthermore, a social security system that anticipates that sick people get well within a year and either go to work, or lose their sick benefits and move on to rehabilitation or Social Security Disability, makes the situation very complicated for fibromyalgia patients. Therefore, when patients are finally diagnosed, many are in such poor condition physically, mentally, and financially, that they actually qualify for Social Security Disability if they can only convince the proper authorities.
The Danish Social Security System
The way the system works, a so-called resource profile has to be made before any decision can be reached about rehabilitation and disability benefits. The resource profile is a document that is filled out in co-operation with a caseworker and describes the patient’s challenges in the categories of education, labor experience, interests, social competence, re-adjustment ability, learning ability, work-related wishes, performance expectations, work identity, residence and finances, social network, and health. In addition it contains a brief description of the course of the disease.
The diagnosis is crucial to the case treatment. Any permanent physical symptoms or objective findings by the examining specialist are taken into account in order to determine whether there is a permanent reduction of the patient’s function and/ or work abilities. Often, where fibromyalgia is concerned, there will be a significant absence thereof and the specialist’s conclusion may be that this is a somatizing condition, which again leads to the conclusion by the caseworker that all the patient needs is to learn new action patterns and coping strategies in order to return to the workforce.
The question the caseworker focuses on is what the patient is capable of on paper—disregarding the fact that the patient feels and knows that her work ability is limited considerably by pain, fatigue and lack of concentration. The overall view of the patient’s resources and challenges typically shows that the patient needs personal growth in order to master her life situation and be able to return to the workforce.
The expectation is for the patient to undergo a mental change—not for the system to acknowledge that the patient, rather than suffering from mental difficulties, suffers from widespread pain and other symptoms for which a solution has yet to be found. This also means that the challenges mentioned in the resource profile concern anything but health-related issues, unless there is a more recognized additional diagnosis such as arthritis or hypermobility syndrome.
The next step is to send the patient to a rehabilitation institution where her work abilities can be tested.
As some fibromyalgia patients actually have some working abilities and wish to maintain a position in the workforce, a so-called easier job or a flex job may be a possibility.
“Flex job” means a full-time job in which working conditions like special needs, frequent rest periods, being absent when necessary, the chance to change to a part-time job, etc., are determined and written down. The wages are typically the lowest income within the field and the employer will receive compensation from the state of N, H , or O of the amount, according to the degree of disability of the person in question.
Diagnosis, Treatment, and Public Perception
In Denmark, rheumatologists traditionally undertake the examinations and initial treatment of fibromyalgia. The Parker Institute in Copenhagen is the foremost institution of fibromyalgia research, but the Center for Sensory-Motor Interaction (SMI) Department of Health Science & Technology of Aalborg University has done impressive research into the clinical importance of pain from deep structures, and will host an International Association for the Study of Pain Research Symposium titled “Fundamentals of Musculoskeletal Pain” in 2007.
Denmark holds four multidisciplinary pain centers, one of which does not recognize fibromyalgia. The waiting lists are long and it is not uncommon to wait 18 months to two years for treatment.
Obviously the public’s perception of fibromyalgia mostly depends on media coverage and partly on “the one you know.” We need some high-profile cases to step forward and prove that FM patients are not just dissatisfied, lazy housewives.
As long as the disease is not officially recognized, the field is open for all sorts of opinions and guesswork by “experts” who do not have to prove any expert knowledge as long as they are in the public eye. Thus we have seen a number of psychologists and psychiatrists who push their own views and disregard the physical side.
We have to face the fact that we are dealing with something that is viewed as a “woman’s disease” and the interest in doing research into the disease and funding research into medical treatments is depressingly low.
The estimated number of Danes suffering from fibromyalgia is 50,000. However, as long as the system does not function optimally, it is feared that there is a number of undiagnosed cases.
The Danish Fibromyalgia Association
The Danish Fibromyalgia Association has approximately 3,500 members and exists on membership dues, donations, and grants. Although we seem to be fighting an uphill battle, we have managed to win the attention of a number of politicians and researchers, and we are hopeful that the future shall turn the tides. However, all working hands at the Association are also suffering from fibromyalgia to varying degrees.
We publish a magazine three times yearly, which is attracting increasing interest from health care workers. We have two special editions on the drawing board. One will cover the topic of family and relatives, and the other will focus on young fibromyalgia patients. We participate in international conferences and report the latest research back to our members, hoping that the news shall eventually reach the relevant authorities in Denmark.