Following some serious Twitter action from a group of tenacious parents on our facebook support group over the last few weeks, we received the welcome message from Dr Sarah Jarvis that she would be covering the conditions in her ‘Medical Monday’ on the Jeremy Vine BBC Radio 2 show.
Dr Sarah Jarvis took the time to speak with us about the conditions ahead of the show and was saddened to hear about the difficulties faced by families affected by PANS and PANDAS in accessing support.
Both Dr Sarah Jarvis and Jeremy Vine spoke eloquently and with compassion about the conditions, the probable causes and the serious effects of the lack of provision in the UK for acknowledging and treating these conditions. They took calls and emails from parents of children with PANS and PANDAS who spoke about their own experiences with PANS.
One thread which ran through all of the stories was that each person who spoke had needed to visit a private doctor in order to find answers. One contributor’s daughter had been ill for a full 9 years before she was finally given a diagnosis and offered treatment.
This is sadly a story we hear time and time again, and we sincerely hope that it is one which we will hear less frequently as more awareness is raised.
You can hear the show via iplayer if you scroll through to 1:06:04 https://www.bbc.co.uk/sounds/play/m000p1pq