Optimalisatie van de werkingsprocessen van het Bijzonder ... - KCE

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58 Special Solidarity Fund KCE Reports 133 6.2.2 Positive elements regarding the existence and functioning of the SSF • All respondents indicated that the existence of the SSF provides an answer to non regulated topics in the compulsory health care insurance system. The SSF is a social safety net, perceived as the ultimate “emergency solution” for some very specific cases. • The SSF can detect and list non-regulated cases in the obligatory health care insurance system, provide information to the competent authorities on these cases and formulate suggestions on what cases should be included in the compulsory health care insurance coverage. This is seen as a “policy” task of the SSF. 6.2.3 Negative elements on the functioning of the SSF/suggestions for improvement • The duration of the procedure (initiation to decision) is judged by nine of the twelve respondents as very problematic. The bottleneck is seen at the level of the sickness funds since an application, once it is send to the SSF, is quickly decided upon at SSF level. Especially for patients awaiting a decision of the SSF before starting treatment, important human dilemmas arise. An emergency procedure directly to the SSF is suggested as a possible solution. • The procedure is defined as heavy (much paperwork) mainly for the doctors. For the social services the workload is usually seen as high but acceptable. Avoiding duplication of documents to be submitted, acceptance of “post factum” provision of the hospital’s invoice document, acceptance of electronic signature would reduce the current administrative burden. • The added value of the intermediate levels (sickness funds: local and national level) is unclear for the majority of the respondents and enlarges the throughput time of SSF applications. Submission of files directly to the SSF is suggested as alternative. • The SSF is not very well known. This is a reality for employees of social services, medical doctors and smaller local sickness funds. An active approach from the SSF (yearly presentation on the functioning of the SSF and recent changes, more accurate information on criteria and decisions) would improve transparency and visibility of the SSF. • “Open communication” by the SSF is judged non-existent. The internal functioning of the SSF (procedure) is unclear for the respondents. The lack of a clear motivation why cases are approved or denied (inclusion criteria/exclusion criteria) and why only a limited percentage of financial costs is reimbursed, is one of the reasons why lack of transparency is mentioned as a bottleneck for the SSF. Direct contact with the SSF is not allowed and consequently does not take place. For complex and serious cases, direct contact would be highly appreciated. It would increase the accessibility to the SSF and improve the image of the SSF, which is now perceived as a very isolated department/ non transparent institution. • The administrative focus of the SSF sometimes overshadows the medical assessment of a file. Two SSF files were rejected as the patients died in the meantime and no “declaration on honour” could be added to the file. • If the SSF intends to reject an application, it has to be motivated from a medical point of view. The prescribing and treating medical doctor should be able to argument the patients’ case.
KCE Reports 133 Special Solidarity Fund 59 • The name “special solidarity fund” is confusing and creates the expectation that the financial situation of the patient is used as criterion, influencing the final decision of the SSF and the amount reimbursed. Several respondents indicate that the financial situation of the patients has to play a role in the assessment of a SSF file. One respondent would use this criterion as an eligibility criterion. • The requirements asked by the sickness funds for SSF files differ regarding the required degree of detail. More uniformity in required documents could simplify the administrative structure of a file. 6.3 PATIENT ORGANISATIONS 6.3.1 Overview of the interviewed patient organisations Table 10: Overview of interviewed patient organisations DEBRA (Dystrophic Epidermolysis Bullosa Research Organization) Number of interviewees 2 PH Belgium (Pulmonary hypertension Belgium) 1 BOKS (Belgian organization for adults and children with metabolic disorders) 2 NEMA (Flemish patient organization for neuromuscular diseases) 1 Radiorg.be (Belgian patient organization for rare diseases) 1 A brief presentation of the interviewed patient organizations and their activities can be found in annex 9.11. 6.3.2 Positive elements regarding the existence and functioning of the SSF • The main positive elements raised by the patient organizations are broadly the same as the ones perceived by the social services. • All respondents indicated that the existence of the SSF provides an answer to non regulated topics in the compulsory health care insurance system. The SSF is a social safety net, perceived as the ultimate “emergency solution” for some very specific cases. • Patient organizations are putting more the emphasis on the fact “a SSF system” needs to exist as it is crucial for many of their members affected by rare diseases. It is of less relevance for them by whom (what institution), under which system (compulsory health care insurance system or a separate initiative) or using which kind of procedure (decentralised or centralised) the reimbursement system is organized. 6.3.3 Negative elements on the functioning of the SSF / suggestions for improvement • Patients are worried that the SSF is an emergency solution. The real issue is to have a solid and sustainable reimbursement system that guarantees equal and equitable treatment of patients having serious rare diseases, now and in the future. Why should we exclude a patient from receiving an essential but expensive treatment? Each patient has the right to receive the 'necessary'/'optimal' treatment even when financial costs are high. Accessibility from a financial viewpoint needs to be guaranteed, through the solidarity principle. • The duration of the procedure (initiation to decision) is judged as too long although respondents noticed a decrease of the throughput time over the last years. • The procedure is defined as heavy and complicated (much paperwork) mainly for the doctors.
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Optimalisatie van de werkingsprocessen van het Bijzonder ... - KCE

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