Update for our TSC Community in WA

Perth Children’s Hospital (PCH) has provided TSA with an update following our meeting with them in December last year to discuss the suspension of VEEG* services. The good news is that the hospital is in the process of hiring three international Clinical Neurophysiology Scientists. Once these new staff members are on board (which depends upon visa processing and international relocation times) PCH will be able to recommence VEEG services. It currently hopes this will be by mid-2024.

For patients on the VEEG monitoring waitlist, PCH assure us that a multidisciplinary case conference clinic and clinical meeting time are ongoing, ensuring each child has a plan in place, with safety as the top priority.

We hope these developments will increase support for our TSC Community in Western Australia in the not too distant future.  TSA and PCH will continue to keep the lines of communication open and we will publish any further updates.

In the meantime, if any families in WA have specific concerns or questions about care, please feel free to contact TSA’s Nurse Katrina Watt or Rob Best, TSA’s WA Regional Contact. Both can be reached by sending an email to [email protected]

* VEEG is used to monitor brainwaves and seizure activity over multiple days and is often used in the diagnosis, management and work up for surgery for patients with TSC who have retractable epilepsy.