Hi Gitte,
Here is a link that to the Netherlands Association of Posttraumatic Dystropy Patients. Originally posted thanks to CRPSbe from Belgium.
http://pdver.atcomputing.nl/english.html
It has further links to both practitioner and patient guidelines and may be of assistance for you in your discussions with Oliver's doctors. There are many treatment recommendations that are not used here in North America but may be available to Oliver in Denmark.
Quote:
The Evidence Based Guidelines Development (EBGD) Guidelines on Complex Regional Pain Syndrome type I (CRPS-I) dealing with the diagnosis and treatment of CRPS-I were published in 2006. These guidelines were drawn up by a large number of Dutch medical practitioners in association with the Netherlands Institute for Healthcare Improvement (CBO) and adopted by the relevant scientific professional associations. Our patients association was also involved in drafting the guidelines.
The EBGD Guidelines on CRPS-I have been written to give practitioners more clarity in dealing with this condition, help them coordinate treatments more smoothly, and give the same information to their patients. The guidelines contain recommendations for practitioners to back up everyday practice.
The guidelines are the outcome of scientific research and opinions of experts, drawing on evidence to reach conclusions and recommendations. The evidence consists principally of articles on scientific studies into CRPS-I, which were assessed for their quality on the basis of EBGD assessment forms. Articles of moderate or poor quality were excluded. If you would like to read about the EBDG guidelines development process in full, go to the CBO website and click on Guidelines Development.
The guidelines do not have the force of law, but contain sound scientific ideas and recommendations that have broad support and should be used by practitioners in order to provide good care.
A separate guideline text has been developed to educate patients about their disease, and to present a non-scientific insight into the practitioners version. We hope that this patient version will give all patients a good understanding of the treatment options available and will help you decide on the right treatment in consultation with your practitioner.
Netherlands Association of Posttraumatic Dystrophy Patients
I.L. Thomassen-Hilgersom, chairwoman
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MsL