Latest UK guideline news
After early conversations with PANS PANDAS UK, NICE have agreed to work with the charity and the PANS Guideline Development Group (GDG) as part of their new guideline collaboration programme.
Publication is anticipated in Autumn 2026.
The National Institute for Health and Care Excellence (NICE) has a reputation as a world-leader in providing trusted advice and guidance to the health system. Last year, NICE launched a new initiative; the guideline collaboration programme. This new way of working in partnership with organisations (like charities, royal colleges and professional working groups), means that NICE are now able to review selected independently-produced guidelines and, if these meet the standards required for the programme, NICE will signpost to these new guidelines from their website.
“Working collaboratively on guidelines allows us to share best practice, eliminate unnecessary duplication, and ensure clear and consistent messages across the healthcare system. By partnering with key organisations, we can strengthen implementation and drive meaningful improvements in care outcomes”
– Eric Power, NICE interim director of the centre for guidelines
What does this mean for the PANS guideline*?
PANS PANDAS UK and the PANS GDG are delighted to be working in partnership with NICE. We welcome this new initiative which will give the PANS guideline increased visibility and give additional reassurance to health professionals that the guidelines have been developed to the highest possible standards.
Provided the final PANS guideline meets the required methodological standards required by NICE, this will now mean that it will be signposted from the Royal College of Paediatrics and Child Health and NICE websites, which are both frequently consulted by health professionals looking for trusted information about health conditions.
“We are delighted to be taking this important step together with NICE and RCPCH to publish nationally recognised guidelines which will improve standards of care for children and young people with PANS and PANDAS.”
– Katy Hindson, Health and Policy Lead, PANS PANDAS UK
What difference will the guideline make?
The guideline will provide long-awaited clarity about best practice for assessment, diagnosis, management and monitoring of people with symptoms of PANS and PANDAS. It will provide a useful reference point for families and health professionals to help guide and support children and young people with the conditions.
The guideline will be an important step towards better care for our community based on current evidence and knowledge whilst research into PANS and PANDAS evolves.
What are the next steps?
The PANS GDG are making good progress towards publishing the completed guideline. They have now completed initial scoping (deciding what will and won’t be included within the guideline), a robust literature review (identifying what scientific evidence there is about the conditions), and will launch the Delphi study in early February.
A Delphi study is a way of using collective experience and expertise to reach an agreement. It is often used in guideline development, particularly for conditions where there are gaps in the evidence.
You can read more about the Delphi Process here.
This diagram illustrates where we are on the journey of publishing a robust PANS guideline – click to enlarge
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More information:
Why is it called the PANS Guideline, what about PANDAS?
PANDAS is a subset of PANS, when it is known that the trigger for onset was Strep A. The guideline will cover both PANS and PANDAS.
Why do clinical guidelines take so long to produce?
The process to develop clinical guidelines which are robust and will be widely adopted is time-consuming. It also requires input from many different people, including doctors, researchers, people with lived experience and guidelines experts. In between numerous meetings, a huge amount of work must be done to gather and review evidence, seek feedback from GDG members and wider external stakeholders with sufficient time for consultation.
Why aren’t NICE developing guidelines for PANS and PANDAS?
There are two main reasons why these are RCPCH-endorsed guidelines rather than NICE guidelines. The first of these is that, whilst research into PANS and PANDAS is evolving rapidly, there is not yet sufficient, high-quality evidence (such as clinical trials, observational studies and qualitative evidence) to meet the threshold for NICE guidelines to be created.
The second reason is to do with capacity at NICE. They simply do not have sufficient resources to create guidelines for every condition which requires them, alongside maintaining and updating their existing library of guidelines.
We are pleased to be taking part in NICE’s new way of working, which we anticipate will aid enormously in raising awareness of the new guideline and increasing professional trust in its recommendations
What is the difference between a NICE guideline and a guideline produced in collaboration with NICE?
NICE guidelines are fully developed, owned, approved, and published by NICE. Guidelines produced in collaboration with NICE are independently produced by an organisation (such as a royal college, charity or professional working group), with involvement from NICE. NICE guidelines are treated by the NHS as the expected standard of care. Clinical guidelines produced by external groups in collaboration with NICE, whilst likely to be influential within clinical communities, may not drive commissioning decisions within the NHS in the same way.
Nonetheless, collaboration with NICE signals that guidelines have been produced with methodological rigour and are a credible source of information
Will doctors have to follow the guidelines?
All clinical guidelines, including NICE guidelines, are advisory documents designed to inform health professionals. They are not mandatory and doctors are entitled to exercise their own proficiency and judgement, acquired through clinical experience and clinical practice.
How can I find out more about how the PANS GDG are working with NICE?
Click here to read more about the NICE guideline collaboration programme.
