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

60 Special Solidarity Fund KCE Reports 133
• The added value of the intermediate levels in the centralized procedure
(mainly the local sickness funds) is not clear for the majority of the
respondents and unnecessarily enlarges the throughput time of SSF
applications.
• Lack of knowledge within the local sickness funds should be eliminated
from a patient’s perspective. Centralization of knowledge and the
development of single point of contacts would mean of world of
difference for the patients.
• The SSF is not very well known. This is a reality for the patient
organizations and their members but also for medical doctors and local
sickness funds. A proactive approach from the SSF (ask the patient
organizations to act as information disseminators towards their members)
or giving a lecture on the SSF activities on an annual basis to the patient
organizations would improve the visibility of the SSF.
• The SSF is judged as a very isolated department, mainly because direct
contact with the SSF is not allowed and, as a consequence, does not take
place. For complex and serious cases, patient organizations find it weird
that the whole SSF evaluation is purely based on paper documents. A
patient is never asked to show up or to explain / clarify his situation.
More openness would be highly appreciated. It would increase the
accessibility to the SSF and improve the image of the SSF.
• Most of the criteria, used by the SSF are not clear and not well known or
very susceptible to interpretation.
• The administrative focus of the SSF sometimes overshadows the medical
assessment.
• The name “special solidarity fund” 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. This is currently not the
case and 3 of the 4 patient organizations do not want this to happen. For
them, all patients confronted with a rare disease have the right to equal
reimbursement regardless of their financial situation.
• All patient organizations support the view of clustering patients with rare
diseases and treat them in a limited number of hospitals or reference
centres. This will improve the quality of the medical care, the
development of knowledge centres and allow structural support to be
strengthened. Now patients still have to search for existing initiatives and
accurate care provision and support systems including the SSF themselves.
In an optimal situation this should not be their primarily focus since facing
the diagnosis of a rare disease they have other primary concerns to
handle.
• The clustering of patients in a limited number of reference centres would
also ease the contacts and foster information exchange with the SSF.
6.4 THE MEDICAL SPECIALISTS
6.4.1 Brief presentation of the interviewed physicians
For the selection criteria used to obtain the sample, we refer to the methodological
part of this report. The thirteen doctors interviewed all are medical specialists. The
medical disciplines they exercise are: anaesthetics (1), paediatrics (5), cardiology (1),
neurology (4), pneumology (1) and gastroenterology (1). Sub-specialisations are: pain
therapy (1), metabolic diseases (2), oncology and haematology (2), immunology (1),
neuropaediatrics(2) , neuromuscular diseases (1), paediatric neurologist (1), pulmonary
hypertension (2). All medical doctors are working in hospitals and treat their patients in
the hospital setting (ambulatory care and inpatient care).
The sample is composed of five physicians who predominantly treat adults, four mostly
children and four both patient categories.