The NSW Huntington Disease Service comprises resources of the Western Sydney Area Health at Westmead Hospital and Lottie Stewart Hospital, Dundas.
The Children's Hospital, Westmead also contributes to the Service.
Health professionals from these organisations work together as a team which is experienced in all aspects of the effects of HD on the individual and the family. They have close links with other health and welfare workers who may be involved with the affected person, and also with voluntary bodies such as this Association.
The Hunter Area Health Service also provides a service based in Newcastle. This includes predictive testing and social work support.
The Huntington Disease Service holds a weekly outpatient clinic each Monday in the University Clinic, Westmead Hospital. This offers diagnosis and on-going management for people with Huntington's Disease as well as neurological check-ups for those going through predictive testing.
This is the only specialist Huntington's Disease clinic in New South Wales and sees people from all over the state.
People attending for the first time need to have a referral letter from their doctor. They should also bring their Medicare card as Medicare meets the cost of the service. After diagnosis, people are usually reviewed six-monthly, or more often if needed.
Dr Elizabeth McCusker, who is Senior Staff Specialist in Neurology at Westmead Hospital and also Director of the NSW Huntington Disease Service, is the neurologist responsible for the clinic. She is also the neurologist who attends residents of Huntington's Lodge at Lottie Stewart Hospital.
The clinic also provides access to other services in psychiatry, social work and neuropsychology as well as those offered by the Outreach Service such as speech pathology, occupational therapy, physiotherapy, diversional therapy and dietetics.
Reasonably priced accommodation can be arranged for those travelling from rural areas.
For further information about the clinic, please contact the Social Work Department of Westmead Hospital (ask for the Huntington's Disease social worker). The telephone number is (02) 9845 6699.
The telephone number for making appointments for the clinic is (02) 9845 6544.
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The Huntington Outreach Service is based at Lottie Stewart Hospital
and is a joint, multidisciplinary program with Westmead Hospital.
Contact includes telephone calls, outpatient visits to the hospital
or home visits. (Home may be a private home, boarding house,
nursing home or hostel). Staff can help those with Huntington's
Disease, their families and carers in various ways.
Services include:
The Service also organises Outreach Clubs, which are social groups for people with Huntington's Disease, and Carer's Groups, which support and educate carers.
Educational resources are available to medical practitioners, area health services and other staff delivering care in acute hospitals, hostels, nursing homes and other settings.
Contact details for the Service are available from the Association or from the Outreach Coordinator, Angela Lownie, at Lottie Stewart Hospital. Her telephone number is (02) 9804 5863.
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