Yes, we agree. In the case of PIMS-TS, public awareness of symptoms and data would be reassuring. An acknowledgement of PIMS-TS families and their need for coordinated follow up care would be reassuring. To be listened to would be reassuring. @PIMS_Hub@sajidjavid@UKHSA
1/2 Yes, very important that this is addressed, but not just at GP level. PIMS families report multiple misdiagnosis at all levels. It is not their fault and families are forever grateful for their care once diagnosed. Diagnostic protocols need to be resent as a matter of urgency
2/2 As far as numbers go, PIMSTS is classified as "rare" as it affects less than 1: 2,000 of the general population. Approx cases in the UK (given there is no public data) are 3,000 since March 2020. This is more cases than Meningitis. Rare diseases require enhanced awareness!