This document sets out recommended
models of care for patients with haemophilia and related disorders.
The cornerstone of effective haemophilia treatment is comprehensive
care, delivered by a multidisciplinary team.
The delivery of care
to this patient group is particularly sensitive, as many patients
have been infected with either HIV and/or hepatitis as a result
of their previous treatment.
This specification builds upon previous
health circulars and should be considered in tandem with treatment
protocols produced by the UK Haemophilia Centre Doctors Organisation
(UKHCDO).
Although the delivery of haemophilia
care is expensive, modern treatment for what is a life long,
painful and debilitating condition is remarkably effective.
A child born today with severe haemophilia can look forward
to an excellent quality of life and a normal life expectancy.
A major change recommended
is the establishment of closer relationships between Haemophilia
Centres and Comprehensive Care Centres; this should be monitored
by a regional network - involving input from multidisciplinary
haemophilia care professionals, commissioners and patients -
with responsibility for strategic planning and audit.
Current audit programmes involve
only Comprehensive Care Centres. The specification sets out
proposals for audit of all Haemophilia Centres, together with
a suggested audit template.
The specification
places the patient at the centre of treatment delivery but stresses
also the importance of patient participation in the health care
process, including the provision of outcome data from the use
of coagulation factor concentrates in the home setting.
This document is
perceived as being a stepping stone towards the development
of a formal service framework for haemophilia and related disorders.
