Rheumatism Action Plan 2009
09.10.2009 14:47
Insight into the current care situation by Prof. Dr. Erika Gromnica-Ihle, rheumatologist and President of the German Rheumatism League Federal Association
In 2006, the German Rheumatism League published its first "Rheumatism Action Plan" and presented it to policymakers. The recently revised 2009 action plan outlines what has improved and – unfortunately – worsened in recent years.
In general, it can be stated that far too many people with rheumatic diseases still do not receive timely and sufficient help to alleviate their chronic condition and avoid pain, impending disability, and inability to work. Fewer and fewer affected individuals are taking advantage of the opportunities for medical and vocational rehabilitation. According to data from rheumatologists in the so-called core documentation, just over 51 people received inpatient medical rehabilitation in 2007. In 1994, the figure was approximately 161. Low-income earners are particularly disadvantaged, as a Bertelsmann study shows they even avoid going to the doctor to save on the co-payment.
From the perspective of the German Rheumatism League, the political debate about the financing and benefits of statutory health insurance must not be waged at the expense of patients. The umbrella organization of health insurance funds has recently announced contribution increases for statutory health insurance. Higher costs for chronically ill patients are unacceptable, as those affected are already heavily burdened by healthcare expenses. Furthermore, private supplemental insurance remains generally unavailable to chronically ill patients as a viable option.
Specialist medical care situation
Newly diagnosed patients are now receiving specialist care somewhat more quickly, but the timeframes are still too long to guarantee the necessary early diagnosis and treatment. According to data from the core documentation of regional rheumatology centers, in the case of rheumatoid arthritis (440,000 affected individuals), it takes an average of 13 months until the first contact with an internist specializing in rheumatology; in the case of ankylosing spondylitis (340,000 affected individuals), it takes even more than five years. This results in a loss of valuable time during which the joints are permanently damaged by inflammation. The treatment goal for newly diagnosed rheumatoid arthritis is now "remission" of the disease. However, this can only be achieved if patients receive drug treatment within three months of the onset of symptoms. Early consultation hours and training for general practitioners are therefore important initiatives, which the German Rheumatism League also supports.
Although the number of practicing rheumatologists has steadily increased, Germany is still far from achieving comprehensive, high-quality care. The German Society for Rheumatology considers a ratio of at least one rheumatologist per 50,000 inhabitants necessary – a ratio not even achieved in metropolitan areas. Currently, depending on the federal state, there are between 0.29 and 0.72 rheumatologists per 50,000 adult inhabitants.
From the perspective of the German Rheumatism League, special needs authorizations for rheumatology must be granted more frequently to improve the situation. In the long term, we demand a separate authorization for internist rheumatologists, independent of the authorization status of other internal medicine specialties in the catchment area.
Training of rheumatologists and improved communication between doctor and patient
Ensuring a steady supply of future rheumatologists is also crucial. With the Rheumatism Action Plan 2009, the associations of the German Rheumatism League are appealing to the state ministries of health and research to find ways to attract young students to rheumatology. A key demand in the revised action plan is the creation of additional professorships in rheumatology at universities, rather than the reduction of existing ones.
With a new project, "PatientPartners," the German Rheumatism League is also involved in the training of medical students, utilizing specially trained rheumatism patients. A first pilot phase began a few weeks ago at the University of Düsseldorf and has been very well received by the students. The curriculum for aspiring physicians includes a mandatory module on joint swelling, which all medical students must complete in their second year of practical training (fourth year of study). The module is offered weekly to 12 students at a time at the university hospital and consists of two teaching units. The course is not led by a professor or lecturer; rather, the trained patients themselves are the instructors. They present their medical history, the concept of "PatientPartners," and the Rheumatism League. Further content includes a role-playing exercise in taking a medical history, reflection on the interview and feedback from the trained patient, as well as an examination of hands affected by rheumatoid arthritis.
In general, the German Rheumatism League advocates for improved communication and a collaborative partnership between doctors and patients. Over the years, patient education programs have been developed in cooperation with physicians, psychologists, and other specialists. Structured information resources for rheumatology practices are currently being developed to complement these programs. The regional rheumatology centers and the professional association of practicing rheumatologists, along with the scientific society, are particularly involved in this effort. The experience and perspective of the German Rheumatism League's advisors are also being incorporated.