"Friday 19th April 2024 marked the inaugural meeting of the PANS PANDAS Clinical Guidelines Development Group, held in central London. With 30 attendees, including clinicians from all relevant fields of medicine and representatives from the patient community, the formation of this group represents a significant step forward in developing better healthcare for people with PANS and PANDAS across the UK. We are heartened by the high level of engagement in this important process and feel that it reflects an acknowledgement that much more needs to be done by the NHS to improve the lives of children, young people and adults living with these conditions." "Why are these clinical guidelines rather than NICE guidelines? National Institute for Health and Care Excellence (NICE) guidelines are evidence-based recommendations for health and care in England and Wales. At present, NICE does not consider there to be a sufficiently robust evidence base to meet the criteria for them to produce guidelines for PANS and PANDAS. The PANS PANDAS Research working Group is driving forward research so that this will change in future. Many conditions, and particularly conditions considered to be predominantly paediatric, lack sufficient research to qualify for NICE guidelines to be developed. In such cases, it is common for clinical guidelines to be developed. Clinical guidelines are recommendations on how to diagnose and treat a medical condition. The clinical guidelines for PANS and PANDAS will be developed in conjunction with the Royal College of Paediatrics and Child Health (RCPCH) and the guidelines development group will be seeking endorsement of the finished guidelines from the RCPCH upon completion." https://www.panspandasuk.org/post/work-begins-to-develop-uk-clinical-guidelines-for-pans-and-pandas
I've just had a look through the general website. It is an interesting one and I don't know the situation regarding whether they are battling the same issues with guidelines and poor treatments etc? And whether the composition for their guidelines has any complications of different schools or could be 'straightforward' in the sense of having a good composition etc? It would be interesting to hear if this is going well so far for them? I noted one leaflet makes a point that the sleep issues are nothing to do with sleep hygeine and that exhaustion makes all the other symptoms worse. Sounds familiar. And that the website has certain pages like FII being an issue some are dealing with. And sounds like a familiar issue that perhaps across a lot of other conditions there are certain behavioural assumptions/traditions that are counterproductive to this condition that we might have 'in common'
