Services Provided by the Queensland Haemophilia Centre
Haemophilia Centres were established at the Royal Brisbane and Women's Hospital and the 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 Queensland Children's Hospital and an Adult Centre at the Royal Brisbane and Women's Hospital.
The Queensland Haemophilia Centre provides a regional and rural service with outreach clinics and telehealth services 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, Sunshine Coast, Rockhampton (paediatrics only), Mackay (paediatrics only), Cairns, and Townsville.
The centre provides advice, assessment, ongoing follow-up and referral regarding factor replacement therapy, musculo-skeletal and orthopedic assessment, blood-borne viruses, genetic counselling, psychosocial support and counselling. A Comprehensive Care Centre is best placed to provide high level care for people who have been diagnosed with inherited bleeding disorders - Haemophilia A and B (factor VIII or IX deficiency), von Willebrand's Disease and other less common conditions.
The members of the Centre staff work as a team to provide a comprehensive 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 Disease and other less common coagulation conditions. Provision of genetic counselling to known or potential carriers of Haemophilia A and B and access to genetic testing.
Access and referral to specialist medical services including orthopedic, liver and infectious disease specialists.
Both the Child and Adolescent Centre and the Adult Centre are involved in clinical trials of novel haemophilia therapies. The Adult Centre participates in phase III haemophilia gene therapy dosing studies.
The focus of haemophilia nursing services is the promotion of optimal health and independence, in a variety of settings including the home.
- Provision of specialist haemophilia nursing care and support for children, adolescents, adults and their families throughout Queensland.
- Coordination of care and case management, both in the hospital and community setting.
- Provision of education and advice for bleed management and prevention.
- Follow up and support of home care.
- Education and information to daycare centres, schools, and community groups through telephone contact and visits.
- Provision of training and education and support for staff including
- intravenous cannulation, central venous access devices, product preparation and administration
- support to other nursing staff and health care professionals throughout Queensland.
Physiotherapy for the person with haemophilia aims to maintain muscle and joint health in order to minimise impairment and disability. This therapy will occur in a clinic or outpatient setting and includes a home exercise program.
The service provides:
- Advice and support to new families on normal growth and development and coping with haemophilia.
- Support to those with chronic issues (eg arthritis) for pain relief, maintenance of joint function, muscle strengthening, footwear advice, maintenance of independence, and prevention and management of secondary musculoskeletal complications.
- Preparation for, and rehabilitation after surgical intervention.
- Physiotherapy management of acute bleeding episodes.
- Education and support for those children starting new schools or for adults in the workplace.
- Provision of individual exercise programs (including Gym and hydrotherapy) to improve fitness levels and advice on sporting issues.
The Haemophilia Centre Social Worker and Psychologist provide professional counselling, psychological assessment and treatment, 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 optimise well-being and provide support to individuals and families in relation to the specialised and complex psychosocial impacts which may arise from life-long and chronic disorders.
The following are examples of psychosocial support services for people with inherited bleeding disorders:
- Individual, family and relationship counselling and or psychological intervention in response to living with an inherited bleeding disorders throughout all life-stages.
- Counselling for individuals and families in the event of a new diagnosis.
- Enhancement of skills and knowledge for parents about child management strategies.
- Age-appropriate support for children and youth with inherited bleeding disorders and their siblings.
- Counselling, information and support to manage the psychosocial impacts of inherited bleeding disorders (including blood borne viruses) for
- individuals, partners and families.
- Family planning discussions in conjunction with medical staff.
- Information and advocacy including assistance with navigating health (and other) services.
- Education and support visits to childcare centres, schools and workplaces.
- Group learning activities and support meetings around relevant issues.
- Information regarding Patient Travel Subsidy Scheme for rural and regional patients needing to attend appointments at QCH/ RBWH
- Liaison and referral to community services.