Friday 19th April 2024 marked the inaugural meeting of the PANS PANDAS Clinical Guidelines Development Group, held in central London.
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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.
The purpose of this multidisciplinary group is to reach a consensus on how these conditions should be managed. The guidelines will be developed in conjunction with the Royal College of Paediatrics and Child Health and will look to improve care for those affected whilst work continues to develop research.
During this first meeting the group reviewed the existing literature and international peer-reviewed guidelines and discussed what process needs to be followed in order to produce robust guidelines which will be widely implemented. Attendees considered what people living with PANS and PANDAS want to see from the guidelines and heard testimony from the patient community. Co-production will be central throughout the guideline development process.
It is likely that the process will take at least twelve months to complete and will involve consultation with a wide group of experienced clinicians and patient and parent representatives from across the UK. We are acutely aware that, for all those currently battling to access appropriate healthcare and support for PANS and PANDAS, these guidelines cannot come quickly enough. We urge all clinicians not to delay treatment until the guidelines are published and in the meantime signpost them to the PANS PANDAS Steering Group statement which recommends referring to existing, international peer-reviewed guidelines.
If you have any comments or additional questions about the guidelines, please get in touch with us at feedback@panspandasuk.org.
Further questions
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.
Why does the process of developing guidelines take so long?
What difference will the publication of these guidelines make?
Who are the guidelines for?
What should I tell my doctor about the guidelines?