Australian Haemophilia Centres Directors Organisation

AHCDOs objectives are:

to advance care and treatment of people with haemophilia in Australia;
to advance the education of the medical profession and the broad range of health professionals associated with people with haemophilia in the knowledge of haemophilia and its treatment;
to promote haemophilia research, and to disseminate the results of such research;
to liaise with, and provide information and advice to Haemophilia Foundation Australia, Federal, State and Territory Governments, and other such bodies involved in the welfare of people with haemophilia in Australia.

Source – AHCDO Website

AHCDO is a not for profit organisation and was incorporated in Victoria in January 2001 under the Associations Incorporation Act. It operates as a national organisation from offices in metropolitan Melbourne and membership consists of the medical directors of Haemophilia Treatment Centres and other clinicians actively involved in the treatment of people with bleeding disorders.

The NBA works closely with the AHCDO to ensure that the right products are available to meet patient requirements. This is achieved through a range of activities including:

AHCDO provides a chair and membership to the ABDR Steering Committee
AHCDO members participating on round tables and other consultative mechanisms to prepare for product tenders
AHCDO members participating on tender evaluation committees
AHCDO jointly coordinate with the NBA the activities of the ABDR Data Managers to ensure the timely input of data
AHCDO providing a range of services on an annual basis through the contract for services with the NBA.
AHCDO providing clinical advise on high cost patients to inform the supply plan reconciliation processes.

Further information on the AHCDO can be found at www.ahcdo.org.au

Haemophilia Treatment Centres

The majority of people with haemophilia in Australia are treated at Haemophilia Treatment Centres (HTCs) which are specialist centres that provide comprehensive care to people with haemophilia and other coagulation deficiency states. The comprehensive care model ensures that preventative and general treatment on the complex aspects of haemophilia are given in a co-ordinated way by a multi-disciplinary team within the one centre.

Haemophilia Centres were established under a decision by Australian Health Ministers Advisory Council in February 2001 to provide a leadership role within their hospital, city and outlying areas to ensure that optimal care and an equitable distribution of professional and therapeutic resources, together with responsible record-keeping.

The manner in which these functions are delivered does vary between states including the degree to which they:

operate within a Centralised versus distributed treatment models;
Some centres focus on paediatric or adult patients while others treat all ages; and
Some have relatively small numbers of patients while others have relatively large numbers.

Nevertheless, there are some patients that receive product from clinicians not associated with an HTC. The proportion of product that is used in these circumstances does vary across jurisdictions and there is therefore some variability in the data capture rate within jurisdictions. Accordingly, data on total volume of products recorded from the ABDR may not be consistent with data provided by the NBA from other sources.

In establishing the concept of HTCs in 2001, the Australian Health Ministers set out clear objectives and expectations. These are reproduced below.

1. The objectives of HTCs

Haemophilia Centres are charged with the task of the provision of comprehensive care for people with haemophilia:

Compilation and distribution of guidelines for best practice directed toward optimal care of patients with disorders of haemostasis
Providing protocols for the accurate diagnosis of patients with bleeding disorders
Providing protocols for the regular review of infectious disease markers in patients and their families
The allocation and distribution of therapeutic blood and recombinant products together with advice regarding the usage of blood and recombinant products, at a State and National level.
The establishment of review programs to assess outcomes of therapies.
Provision of regularly updated data to the national Haemophilia Register.
Participation in basic and clinical research

2. Operating concept

Haemophilia Centres coordinate and, where possible, integrate patient care, research and education to provide the optimal use of expertise and resources within hospitals and the community. One collaborative centre for each State and Territory may suffice but this must include adult and paediatric type centres.

The role of the Haemophilia Centres is to provide:

a single point accountability for the care of patients with bleeding disorders with responsibility for the coordination, allocation and distribution of therapeutic resources for the treatment of patients, ie coagulation products derived either from blood donors or recombinant technologies
a clinical service by experienced staff for persons with bleeding disorders and their families at short notice at any time of the day or night
organisation of home therapy programs by the centre or in collaboration with other haemophilia treatment facilities.
a counselling and advisory service for people with haemophilia and their families including genetic counselling and family planning.
specialist medical expertise, principally haematology, surgery (the surgeons would have to be accredited to the haemophilia Centre) rheumatology, infectious diseases and dental services.
specialist allied health services to include physiotherapy, social work and podiatry.
a laboratory service able to carry out all investigations required for the accurate diagnosis of haemophilia and other inherited disorders of the haemostasis and to have access, in association with other centres, to specialised testing facilities, for example gene typing.
a system of record for all investigations, treatments, allocation of therapeutic products and adverse reactions.
a capability to participate in research including clinical trials
educational programs for medical staff, other personnel, patients and their families which promote care of patients with disorders of haemostasis.
an outreach service to isolated patients and treating medical services. The outreach service may include:-
- A haemophilia treatment facility located in a hospital that does not provide all the specialist services
- Designated supervising medical practitioner

All isolated patients where care is managed in an outreach program should be registered at and be reviewed regularly by a Haemophilia Centre which would arrange delivery of and monitor the supply of therapeutic coagulation products.

The Centre must maintain ongoing dialogue with the ‘client’ group in each State and Territory. The role of State and Territory Governments is to designate ‘Haemophilia Centres’ and negotiate the funding of the Centres including the purchase of therapeutic blood and recombinant products for distribution within States (or regions) and Territories. In some States committees have been established to consider and schedule elective surgery.

Advantages of the Proposed Model of Haemophilia Data Co-ordination

Accurate and complete data entry
Dedicated and focused data management
Regular reporting and analysis of collated information
New product initiation of unresolved haemophilia care related questions
Clinical audit of current policies and monitoring of agreed national standards

List of operational HTCs and their ID codes

#	Hospital	Haemophilia Treatment Centre	State
1	The Canberra Hospital	Haemophilia Clinic	ACT
2	Calvary Mater Newcastle	Haemophilia Treatment Centre	NSW
3	Royal Prince Alfred Hospital	Haemophilia Treatment Centre	NSW
4	Sydney Children’s Hospital	Centre for Children's Cancer and Blood Disorders	NSW
5	The Children’s Hospital at Westmead	Haemophilia Treatment Centre	NSW
6	Royal Darwin Hospital	Haemophilia Treatment Centre	NT
7	Royal Brisbane and Women’s Hospital	Queensland Haemophilia Centre	QLD
8	Royal Children’s Hospital	Queensland Haemophilia Centre Child and Adolescent Service	QLD
9	Royal Adelaide Hospital	South Australia Haemophilia Treatment Centre	SA
10	Women’s and Children’s Hospital	South Australia Haemophilia Treatment Centre	SA
11	Royal Hobart Hospital	Tasmanian Haemophilia Treatment Centre	TAS
12	The Alfred Hospital	Ronald Sawyers Haemophilia Centre	VIC
13	Royal Children’s Hospital	Henry Ekert Haemophilia Treatment Centre	VIC
14	Fremantle Hospital	The Haemophilia Centre of WA	WA
15	Princess Margaret Hospital	The Haemophilia Centre of WA	WA
16	Royal Perth Hospital	The Haemophilia Centre of WA	WA
99	NBA	Offshore Patient - Long Term	ACT
98	Inactive Patients	Inactive Patients	ACT

3. Bodies represented through HTC’s.

The following organisations are represented at various HTCs nationally:

Australian Haemophilia Nurses Group (AHNG)
Australia/New Zealand Haemophilia Social Workers’ and Counsellors’ Group (ANZHSWCG)
Australia/New Zealand Physiotherapist Group (ANZHPG)
Haemophilia Foundation of Australia (HFA)

Location of HTCs

Note to diagram. HTC’s in WA will soon combine to form one HTC.

HTC Locations

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