Presently, there are 3 Rett syndrome multi-disciplinary management Clinics in Australia, all 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, another at the Royal Children’s Hospital, Melbourne and the other at the The Lady Cilento Children’s Hospital in Brisbane. Each clinic varies in how it is manned, funded, and how often it is held.
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.
Royal Children’s Hospital, Melbourne
Not only Victorian families can access the Clinic in Melbourne but also those in Tasmania. Like the Clinic in Sydney, it began in 2000 but differs as it is held every 3 months . For a number of years, it comprised a panel of three, namely, a paediatrician, a speech pathologist and an occupational therapist. Unfortunately, at present, RSAA is unclear as to how the Clinic is structured, how often a family can access it and how it operates. Hopefully, answers to these queries can be obtained soon. Appointments can evidently still be made by phoning (03) 93455898.
Lady Cilento Children’s Hospital, Brisbane
The most recent clinic to be established is the one located in Brisbane and it came about as a result of the financial support it received from the Queensland-based Circle of Silent Angels Foundation, support which the foundation intends to keep on providing.
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.