New South Wales Huntington Disease Service

The NSW Huntington Disease Service is funded by NSW Health and run by Western Sydney Local Health District. It is located at Westmead Hospital. 

Health professionals 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 New England Local Health District also provides a service based in Newcastle. This includes predictive testing and social work support.

The Huntington Disease Clinic, Westmead Hospital

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 Clement Loy is the Director of the NSW Huntington Disease Service, and he is the neurologist responsible for the clinic.

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 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) 8890 6699.

The telephone number for making appointments for the clinic is (02) 8890 6544.

Huntington Outreach Service

The Huntington Outreach Service is also based at  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:

  • Nurses - nursing, education and other aspects of Huntington's Disease
  • Social Workers - emotional and relationship problems and using community services
  • Speech Pathologist - speech and swallowing difficulties
  • Occupational Therapist - daily activities and home safety
  • Physiotherapist - walking and moving safely
  • Dietician - nutrition for good health

The Service, in conjunction with the Association, also organises Family and Friends Support Groups which provide support for carers.

Educational resources are available to medical practitioners, local health districts and other staff delivering care in acute hospitals, hostels, nursing homes and other settings.

Contacting the Service

The Service can be contacted on (02) 8890 9953.

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