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Getting the most out of a visit to your GP

GPs (General Practitioners) manage a vast range of illnesses, but many may only have limited experience with rare diseases like TSC (Tuberous Sclerosis Complex). While finding a good GP can be difficult for many people, it can be particularly challenging for people living with TSC.  Many people contacting the TSA Nurse say that they have trouble finding a GP who has experience with the health needs of someone with TSC. This can lead them to feelings of frustration and isolation.

Here are some tips for how to manage visits to your GP that we hope will help.

Information you can provide to your GP
Some practical tips for your first visit to a GP
  • When making your first appointment ask to book for a long consult so that you have some time to discuss your history and needs going forward.
  • Take along a summary of your health history, including when/how the diagnosis of TSC was made. Include information about what parts of the body TSC is affecting, what tests have been done and what treatments have been recommended. Contact the TSA Nurse for assistance on how to do this.
  • Take along a copy of any recent test results or letters from your specialists and their contact details. This can help avoid having to repeat information or re-take any medical tests.
  • Write down any medications that you are currently taking including over the counter medications and vitamins.
  • Have a list of all of the medical specialists involved in your care, their contact details and what they do and give a copy to the GP for their records.
  • Medicare has a Chronic Disease Management program that enables GPs to provide a structured and coordinated approach to care. This may include developing a treatment plan that can be shared with your other health specialists. Talk to your GP about whether this is right for you. Patient information regarding the Chronic Disease Management Plan can be found by clicking here.
  • Some people keep a notebook or folder of contact details of their health care team and test results that they take along to each consultation – you may find this useful too.
  • If you change your GP, make sure that all your treating teams are aware so that the letters that they send out after your consultation get to the right place.
How TSA supports health care professionals

TSA (Tuberous Sclerosis Australia) aims to support health care professionals in providing best practice care for individuals with TSC and their families.  We do this by:

  • providing access to education;
  • developing resources to increase understanding of diagnosis, treatment and surveillance and keeping up to date with the latest research;
  • publishing evidence based management guidelines; and
  • supporting the TSA Nurse as an access point for health professionals to use to find resources.

Health care professionals can find out more here.

If you have any specific questions or would like more advice, please contact the TSA Nurse on 1300 733 435 (Australia only).

Doctors v2


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Life expectancy of people living with TSC
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Sex and sexuality in young people with TSC
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Transitioning from child to adult care
TSA updates
Tubee children’s picture book about TSC
Useful organisations and contacts
Using Facebook
Video library

Last updated: 16 January 2023

Reviewed by: Katrina Watt, TSA Nurse