Embargoed – National Report on the unmet needs of People with Tourette Syndrome

On behalf of the Tourette Syndrome Association of Australia, I am pleased to share with you an embargoed copy of a National Report on the Unmet Needs of People with Tourette Syndrome, along with a summary report outlining key findings and recommendations.

This national report presents findings from a comprehensive survey conducted across Australia, capturing the lived experiences of individuals and families affected by Tourette Syndrome and other tic disorders. The findings are alarming with severe and widespread gaps in diagnosis and treatment, mental health support, education, employment, and access to care.

We would greatly value your attention to this important issue and welcome the opportunity to further discuss how your portfolio might help address the unmet needs identified in the report.

Thank you for your time and consideration.

Charlene Pinnock

Treasurer TSAA

on behalf of the 

Key Facts:

50,000 Australians have Tourette Syndrome

Suicide attempts 5 x higher than the national average

80% report daily physical pain and emotional distress from tics

80% of caregivers experience mental health issues from being a carer

Please read the summary report or full 94 page report for key findings and recommendations

 

About us:

The Tourette Syndrome Association of Australia is an ACNC charity, providing social and emotional support for individuals with Tourette Syndrome and Tics disorders and their families. We run annual camps, support groups, online support, education and school talks, to improve the wellbeing of individuals with Tourette Syndrome, their families and communities.

Contact details:

President Mandy Maysey 

Media: All States TV, QLD/VIC/ACT all media, all topics

0466 627 608

[email protected]

 

Vice President Elisa de Groot 

Media: All states Radio Only, Self Harm/Suicide

0412713721

[email protected]

 

Treasurer Charlene Pinnock 

Media: SA/NT all media, all topics

0417083599

[email protected]

 

Community Educator - Conor Maysey 

Media: All states Education, NSW/WA all media, all topics

0421030016

Tics and Ask - [email protected]

 

Committee Member - Sophie Stack

Media: TAS all media, all topics

0447973236

[email protected]