Yesterday (16th of November 2022), representatives from PANS PANDAS UK travelled to London for a much-anticipated working group meeting. Other attendees included members of the British Paediatric Neurological Association and representatives from the Royal College of Psychiatry, the Royal College of Nursing, the Royal College of Paediatrics and Child Health and the British Paediatric Allergy, Immunology and Infectious Diseases Group. We were also joined by Cathie Long, professional Social Worker. Two parent representatives very kindly made the journey to share their experiences with the clinicians.
We are delighted to report to you all that the meeting was both constructive and hugely collaborative. Witnessing representatives from all relevant bodies working towards better outcomes for our community was a joy to behold. There was no doubt in anyone’s mind that the current situation is untenable and harmful to children, families and the clinicians who support them.
A unanimous decision was reached that the BPNA representative would make the following requests of the president of the BPNA; namely that the existing consensus statement should be withdrawn and be replaced with a statement which clarifies a firm and united intention to work together with all stakeholders to create a new, multidisciplinary consensus. As part of this statement, the BPNA should signpost all clinicians to the existing, peer-reviewed Nordic guidelines as an interim measure whilst a new set of UK guidelines and treatment pathways is developed and agreed.
We have been assured that the BPNA will respond to these requests within the next three weeks, and all attendees have committed to meeting again in December to discuss the next steps. As soon as we hear from the BPNA we will report back to you. What we can say for now is that we left the meeting feeling hugely positive that all those present are fully engaged in working with us, and that we are about to see real, lasting change for all those with PANS and PANDAS.
If you have any questions don’t forget you can get in touch with us via feedback@panspandasuk.org