GPs (General Practitioners) manage a vast range of illnesses, but many may only have limited experience with rare diseases like TSC. And while finding a good GP can be difficult for many people, it can be particular challenging for those 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, and that this can lead them to feel frustrated and isolated. Here are some tips that we hope will help.

What can you do - as a patient or a carer - if you are going to an appointment with a new GP who may not have a lot of practical experience in managing the complexities of TSC?
Some practical tips for your first visit to a GP that may help to make the process smoother
  • 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. 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 and what they do and give a copy to the GP for their records.
  • Medicare has a Chronic Disease Management program that enable 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 have a notebook or folder that they keep with details such as names and contacts of health professionals and 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 professionals

Tuberous Sclerosis Australia (TSA) aims to support health 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 keep 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 professionals can find out more here.

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

Last updated: 17 Oct 2022

Last reviewed by: Katrina Watt, TSA Nurse.