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:

a component for the clinical delivery of Comprehensive care
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:

registration of new patients with severe haemophilia
development of coagulation factor inhibitors

any intended surgical procedures

introduction of new treatment programmes and technologies
immune-tolerance procedures
unanticipated heavy usage of coagulation factor concentrates

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.