As the in house pr and social media manager for a charity - Pans Pandas UK - I am registering on behalf of the experts working within the charity in this sector. The area of expertise is PANS and PANDAS as featured on Channels 5 News https://youtu.be/tTxbraSMwtk Expert Georgia Tuckey, charity trustee talks on behalf of these conditions.
PANDAS is short for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANS is short for Paediatric acute-onset neuropsychiatric syndrome A child may be diagnosed with PANS or PANDAS when: Obsessive-compulsive disorder (OCD), tic disorder, or both suddenly appear following a streptococcal (strep) infection, such as strep throat or scarlet fever or another unknown infection there have been reports of PANS being triggered by Covid. https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(21)00135-8/fulltext
There is much controversy surrounding these conditions in the UK and disparity in adopted treatment protocols. Pans Pandas UK is working hard to align the current UK treatment guidelines with other countries where there has been much more advanced research into these conditions. There has currently been no UK led research into these conditions something which the BPNA and other organisations in the UK are calling for.
These symptoms have been documented as having a higher level of care giver burden than caring for a patient with advanced dementia however there is very little support given to children or the families caring for them in the UK. Plus there is very little awareness - a recent parent survey found that 95% of UK GP's were unaware of the conditions. For more information please visit www.panspandasuk.org
The UK facebook support group has over 4000 members. Many of the parents have an in-depth knowledge of these conditions and are working hard to raise awareness. Many have registered an interest in sharing their stories in the media to help accomplish this. Please contact firstname.lastname@example.org or 07970 555 682 if you are interested in being connected to any of these families.