Update for our TSC Community in WA

Thank you to everyone in our TSC Community in WA who recently provided feedback on the impact of the suspension of VEEG services* at Perth Children’s Hospital (PCH). We heard many concerns that we took to our meeting with representatives from the hospital at the end of last week.

At the meeting PCH confirmed that the suspension of VEEG is due to a critical shortage of trained staff. They assured us they are implementing a number of recruitment and training strategies and are looking both nationally and internationally to try to fill the current skilled vacancies.

Encouragingly, PCH tell us that all patients on the VEEG waitlist now have a personal plan in place.  

Some children will safely remain on the PCH waiting list until the service resumes. Other children are being referred to other service providers in Perth, for in-home prolonged VEEG and standard VEEGs. PCH confirmed that interstate referrals are being made for clinically prioritised high risk patients. Interstate referrals can, however, take time to organise and PCH noted that it cannot guarantee that timing.

Families are, of course, also free to look at interstate options without a referral from PCH. 

This was an informative initial discussion. TSA and PCH committed to collaborate further and PCH said it will communicate with TSA in February to review matters.

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 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.