Thank you to everyone who completed our TSC Health Care Survey 2023.
It was reassuring to see that 99% of you are aware of the need for regular scans for anyone living with TSC and good to see so many of you have regular contact with a range of medical specialists and are getting regular scans of the brain, lungs and kidneys.
Unsurprisingly, you have experienced a wide range of TSC-related signs and symptoms, with the most common, according to survey respondents being epilepsy/seizures and angiofibromas on the skin.
85% of respondents said you are aware that Sirolimus can help reduce the size of angiofibromas and 76% are aware of the fact that Everolimus is available and can reduce the size of benign tumours related to TSC.
Whilst everyone agreed that co-ordination of care is needed, opinion was split on who you would prefer to co-ordinate this care. 40% would like to have a statewide co-ordinator, whilst 26% of you are happy to do it yourselves, another 17% are happy for your local doctor/GP to co-ordinate care and the remaining 17% suggested a range of other co-ordination options, including paediatricians and nurse practitioners.
You were far less divided on how and where care should be provided. 82% of you said you would like services to be provided in a one stop shop clinic in a hospital and 93% of you said you would like to see statewide care services.
Thanks too for all the valuable feedback comments which added a richness to the information we collected.
The survey has given TSA and its Medical Advisory Panel valuable insights into your current thinking on care provision across Australia which will help inform our strategic action plan. Thank you again.