Haemophilia Centres were established at the Royal Brisbane and Royal Children's Hospital in 2000. The Centres act co-operatively and form the Queensland Haemophilia Centre with a Child and Adolescent Centre based at the Royal Children's Hospital and an Adult Centre at the Royal Brisbane and Womens Hospital. The Queensland Haemophilia Centre provides a regional and rural service with outreach clinics to regional centres, liaison with local health professionals and telephone contact with people with inherited bleeding disorders. Outreach clinics occur on a regular basis in Toowoomba, Gold Coast, Cairns, Townsville and Nambour.
The centre deals with a wide range of issues including factor replacement therapy, musculo-skeletal and orthopaedic assessment, blood-borne viruses, genetic counselling, psychosocial support and counselling.
A comprehensive care Centre is required for management of inherited bleeding disorders - Haemophilia A and B (factor VIII or IX deficiency), von Willebrand's Disease and other less common conditions to provide specialist medical assessment, nursing care, counselling, physiotherapy both for hospital and community care.
The members of the Centre staff work as a team to provide a service. These include:
Diagnosis
and management of people with inherited and acquired bleeding disorders -
Haemophilia A and B (Factor VIII & IX deficiency), von Willebrand's Disorder
and other less common coagulation conditions.
Access and referral to specialist medical services including orthopaedic, liver and infectious disease specialists.
The focus of haemophilia nursing services is the promotion of optimal health and independence, in a variety of settings including the home. This is achieved within a framework of care, advocacy, advice and education.
Services include:
Physiotherapy
for the person with haemophilia is aimed at maintaining strength and a good
range of movement in all joints and at preventing or minimising affects of
disability. The majority of this therapy will occur in a clinic or outpatient
setting with an adjunctive home exercise program.
The service provides:
Haemophilia counsellors provide professional counselling, support, information, education, group work, community development and advocacy services for adults, children and adolescents with inherited bleeding disorders and their families. The objectives of these services are to maximise well being and a sense of control over life-issues for individuals and families in relation to the specialised and complex psychosocial impacts which often arise from life-long and chronic disorders.
Haemophilia counsellors develop links and liaise with relevant community organisations such as the Queensland AIDS Council and Hepatitis C Council of Queensland.
Haemophilia counsellors provide services by telephone; mail; arranged personal appointments; participation in RCH, RBWH and outreach clinics; visits whilst people are in-patients at RCH or RBWH; and where practicable home, workplace, childcare, primary and secondary school visits.
The following are examples of haemophilia counselling services:
This page last updated: November 2004
Review date: June 2005
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© The State of Queensland (Queensland Health) 2008.