One of the most challenging times for individuals affected by Tuberous Sclerosis and their families can be transition. This is the time when children are becoming adults, finding their identities beyond the family and also facing challenges moving from the paediatric to the adult health system.
Two projects are underway that are asking for input from families living with TSC on transition.
The APSU will be holding will be holding a forum on transition from paediatric to adult health services for young people living with a rare disease
Date: 23rd of February 2013 Venue: The University of Sydney.
The Forum is a joint initiative of the Australian Paediatric Surveillance Unit, Rare Voices Australia and The Agency for Clinical Innovation, Transition Care.
Forum for Young People Living with Rare Disease: The challenges of the many transitions to adulthood!
Saturday 23rd February 2013 8.30AM TO 2.30PM
The University of Sydney, New Law Building, Camperdown
Do you have a rare disease or condition? 15 to 20 years old? YES?
Then we want to hear from YOU!
It’s not just about transitioning from child to adult health services. We want to hear about other transitions you might be going through: final exams, higher education, employment, relationships…
Why should you get involved?
- Connect with other young people with similar experiences
- Share your views and focus attention on issues that matter to you
- This is your opportunity to contribute to advocacy for better health and community services for young people living with rare disease
- Hear from inspirational young people living with a rare condition
A limited number of support packages will be available to off-set the costs of attending for young people from rural areas of NSW and from interstate
Further details about the forum are here Flyer_23rdFeb13
Through Rare Voices Australia (RVA) carer representatives and consumer representatives are invited to share experiences of transition and how the process could be improved.
Lesley Murphy from RVA will be attending a stakeholder scoping workshop in mid February and will have the opportunity to provide feedback. Other workshop invitees include consumers, carers, paediatric health service providers and other key WA Health staff.
How to provide your feedback
Provide brief comments against the three questions, based on your experience as either a carer or consumer (please nominate) for each of the 6 objectives listed in the table.
- what elements of your transition experience worked
- what was missing; and
- how could the experience be improved.
Carer: provides care and support for a family member or friend who has a disability or illness
Consumer: a person with a disability or an illness and access services directly as the client/patient.
If you wish to refer to the Transition Framework, it can be accessed online from: click here. It includes a number of guiding principles, objectives and strategies for improving transition.
More about the CYHN and the Health Networks can be found on the WA Health Website: click here.
For any other information, or to indicate your interest for further involvement in this project please contact Lesley at [email protected]