A new report shows that many people with TS may not be receiving the right care and treatment.

TSA Trustee Dr Chris Kingswood and our CEO Dr Jayne Spink are both amongst the authors of the report which you can read HERE

Analysis of routine data from health service databases confirmed that around 6,000 people have a recorded diagnosis of TSC in the UK. It also showed that fewer people than we would have expected receive care and treatment relating to TSC associated kidney and lung problems (LAM) and for TSC Associated Neuropsychiatric Disorders (TAND).

Dr Kingswood explained “It is clear that significant proportion of people with kidney, lung and TAND problems are not receiving the monitoring, care and treatment that they need. People with TSC are not invisible; it is just that their needs are ignored.”

To solve this issue we need a national clinic network, recognised and funded by the NHS. Here at the TSA, we will to press for the recognition of these issues and fight for the development of a national clinical network.