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

KCE Reports 133 Special Solidarity Fund 167
Patients with EB immediately fell under this decentralized procedure as they were
explicitly mentioned in the Royal Decree.
• This decentralized procedure (delegation) of EB files towards the sickness
funds is positively assessed by the respondent(s) in comparison with the
central procedure of the past. However, a risk of unequal treatment of
patients exists.
• The different stages of the central procedure were perceived as
problematic mainly at sickness fund level. Files were copied a lot and each
intermediate level added its comments and suggestions with at the end a
completely illegible copy and a very long throughput time. For patients,
after such a long time lapse, it was unclear which costs were accepted for
reimbursement and which were rejected.
• The decentralised procedure handled by the sickness funds has greatly
reduced the throughput time.
• The decentralised procedure has one disadvantage. The respondent(s)
indicate that there are differences between the requirements set by the
different sickness funds. For example, some sickness funds require the
adjustment of the treatment plan when a new product (eg new dressing)
is used. Other sickness funds don’t request this adaptation. There are also
regional differences within the same sickness fund. Although the problem
is perceived as rather limited by the patient organisation, patients don’t
understand these differences and expect equal treatment in regard to
their peers. Till now the patient organisation did not make an inventory of
these differences and did not inform the sickness funds at the national
level of these differences.
• The ideal scenario would be a short procedure with uniform decisions.
The interviewees indicate that it is not realistic to expect from local
employees and/or advisory physicians of the sickness funds to be aware of
all developments (including new materials) regarding EB. Centralisation of
SSF files within the sickness funds would increase medical knowledge on
EB, increase knowledge regarding new developments and products and
contribute to uniform decisions. An additional advantage is the creation of
a single point of contact within each sickness fund for all questions related
to EB SSF files.
• Debra Belgium has always supported the vision to create an EB centre
with as ultimate aim the clustering of medical knowledge regarding EB and
the realisation of structural psycho-social support for EB patients and
their relatives/parents. This EB centre is not yet reality although one
university hospital takes up this role more and more in practice. In this
hospital the social nurse takes the initiative to inform parents of
newborns with EB on the existence of the SSF and supports the
submission of the SSF files. Despite the fact that a large part of the
newborns with EB are treated in this hospital, and thus find their way to
the SSF, Debra has no view on the number of children being born with EB
in other hospitals and which part of them is being informed on the SSF.
Centralisation of EB patients and as a consequence acting on a “bigger”
scale and combining resources would ease a more structural approach
regarding patient counselling not only during the hospital phase but also
after discharge.
• The more patients with rare diseases are clustered the more they will be
informed on all kinds of existing support options including the SSF and the
more the SSF will reach all her potential beneficiaries.