There are 2 Rett syndrome multi-disciplinary management Clinics in Australia, both of which are located at Childrens’ hospitals on the east coast. In most instances, appointments are limited to those Rett syndrome children aged 17 years or under living in the State in which the clinic is located.
At the Clinics, parents can discuss management of their Rett syndrome child’s general health, mobility, spine, feeding, nutrition, seizures if applicable, communication, hand function, etc., with a number of health professionals. A report is then prepared by the clinic for the parents, who in turn can share this information with those health professionals, therapists, teachers and others, who are directly involved with their Rett syndrome child.
One Clinic is located at The Children’s Hospital at Westmead, Sydney, the other at The Lady Cilento Children’s Hospital in Brisbane. Each clinic varies in how it is manned, funded, and how often it is held. It is hoped that the Clinic which used to be conducted at The Royal Children’s Hospital, Melbourne, will recommence in the near future.
The Children’s Hospital at Westmead
Established in 2000, this clinic involves of a range of experts including a dentist, geneticist, genetic counsellor, music therapist, occupational therapist, paediatrician, physiotherapist and a speech path-ologist. An orthotist and/or a neurologist can be called upon during a consultation should the need arise.
The Clinics are held monthly. Management issues are addressed on the last Friday of the month and new patient assessments on the 2nd Friday. Appointments can be made by phoning (02) 98453273.
The Clinic is now funded by the Hospital, however, from 2004 to 2009, the financial support it needed to operate was provided by the Rett Syndrome Australian Research Fund.
Lady Cilento Children’s Hospital, Brisbane
The most recent clinic to be established is the one located in Brisbane. The Complex Child Development Clinic at the Lady Cilento Children’s Hospital maintains contact with those Rett syndrome families in Queensland known to the Clinic. Attendees have access to a clinical nurse consultant, dermatologist, endocrinologist, neurologist, occupational therapist, orthopaedist, paediatrician, physiotherapist, speech pathologist, psychologist and/or a social worker.
Held quarterly, appointments for the Clinic can be made by phoning 1300 731 805 A referral from a General Practitioner (GP), General Paediatrician or another medical specialist, is required prior to initial appointment.