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 Lady Cilento 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 and paediatric 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 Nambour, Rockhampton, Mackay, Cairns, and Townsville.
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 Disorder 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 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 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.
- 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.
Haemophilia social workers and psychologists 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 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 social workers and psychologists develop links and liaise with relevant community organisations such as the Queensland Haemophilia Foundation.
Haemophilia social workers and psychologists provide services by:
- arranged personal appointments
- participation in LCCH, RBWH and outreach clinics
- visits whilst people are in-patients at LCCH or RBWH
- and where practicable home, workplace, childcare, primary and secondary school visits.
The following are examples of haemophilia psychosocial support services:
Counselling for individuals and families in the event of a new diagnosis.
Individual, family and relationship counselling in response to adjustment issues associated with inherited bleeding disorders throughout all life-stages.
Information regarding Patient Travel Subsidy Scheme for rural and regional patients needing to attend appointments at LCCH/ RBWH
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.
Continuing counselling, support and information for individuals, partners and families regarding blood borne viruses.
Genetic counselling and family planning in conjunction with medical staff.
Information and advocacy regarding discrimination issues.
Education and support visits to childcare centres, schools and workplaces.
Group learning activities and support meetings around relevant issues.