Shortly before or after a new baby is born, parents are given a Personal Child Health Record (PCHR). PCHRs usually have a red cover and are known as the child’s ‘red book’. 

Parents are asked to take the child’s red book with them every time they visit an NHS clinic or GP, with the red book containing information such as vaccines and other health information. A digital version of the red book can be downloaded here.

Parents can add information to their child’s red book themselves, which is important if a child has been diagnosed with Tuberous Sclerosis Complex (TSC). An ‘Understanding TSC’ insert into the red book was developed by the TSA alongside Novartis. This insert can help non-specialist healthcare professionals care for the child better understand TSC and the condition’s treatment and management. 

A scan of the TSC red book insert can be downloaded here. The TSA is hoping to be able to provide a fully digital and updated version of the insert in the near future.