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Commissioners must establish an accurate profile
of patients with inherited bleeding disorders who fall within their
catchment area.
The problems that can be associated with inappropriate
contractual arrangements have previously been highlighted by the
Audit Commission (reference 11).
Commissioners should establish appropriate contractual
arrangements with Comprehensive Care Centres and Haemophilia Centres
so as to reflect three types of patient group - severe,
moderate and
mild.
Patients with severe
and moderate
haemophilia will need regular comprehensive review and appropriate
contractual arrangements should be established with a Comprehensive
Care Centre. The degree of care that can be administered at a local
Haemophilia Centre will be determined by liaison between the Haemophilia
Centre and the Comprehensive Care Centre and monitored by the regional
haemophilia network and external audit.
Patients with mild
haemophilia, von Willebrands disease
and carriers with haemophilia
will be offered annual review at least regularly by a Haemophilia
Centre or Comprehensive Care Centre. They will require expert treatment
at times of trauma or when dental or surgical procedures are planned.
These procedures may be carried out at a local Haemophilia Centre
or at a Comprehensive Care Centre depending on the nature of the
procedure and the degree of expertise at the local Haemophilia Centre.
This will be determined by liaison between the Haemophilia Centre
and the Comprehensive Care Centre and monitored by the regional
haemophilia network and external audit.
Appropriate contractual arrangements should therefore
be established for patients with mild
haemophilia to relate to these clinical circumstances
There are two components to the haemophilia
service agreement:
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a component for the clinical
delivery of Comprehensive care |
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a component for the use of
coagulation factor concentrates |
These components should be separate.
The nature of bleeding in patients with haemophilia
is essentially unpredictable and the contractual problems that may
thereby result can be minimised by regular interchange between commissioners
and providers. In particular, service providers should notify commissioners
at the earliest opportunity of development of any of the following:
Because
of the unpredictable and costly nature of delivery of haemophilia
care, commissioning authorities may wish to participate in risk
sharing arrangements with other commissioning authorities.
Regular meetings should be convened between
Comprehensive Care Centres and commissioners so as to monitor contract
activity and discuss evolving issues concerning haemophilia care.
Accurate recording of clinical data is essential for
the effective delivery of haemophilia care. Financial arrangements
and data handling for the delivery of haemophilia care can be complex
and it is strongly recommended that all Haemophilia Centres are
provided by commissioners with the financial resource to generate
this information.

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