Further information about guideline development
As we move towards the publication of a UK clinical guideline for PANS and PANDAS later this year, we wanted to explain a bit more about why this is so important, how it is being developed, and what difference we think it will make.
Why is a UK clinical guideline so important for PANS and PANDAS?
PANS and PANDAS were only identified as distinct medical conditions relatively recently and a lot still remains to be understood about why they happen and how best to treat them. This lack of certainty has led to significant professional disagreement about the conditions and, as a result, great difficulty in accessing appropriate care for people living with the conditions in the UK.
To be published and endorsed by influential professional organisations, guidelines must be developed following strict rules and processes, including having many different perspectives and opinions included. These rules make sure any published guidance is safe, fair and representative of all stakeholders. Unfortunately, previous efforts to develop a widely adopted UK clinical guideline were unsuccessful because these requirements weren’t fully met.
Whilst international, peer-reviewed guidelines for PANS and PANDAS exist, they are not widely used within the NHS. Consequently, families are left with no clear NHS pathway for diagnosis and treatment, and doctors have no UK guidance on how best to provide care for people with these conditions.
This new PANS* guideline will provide clarity and confidence for clinicians in the UK, because it is being developed following the strict rules of best practice for guideline development.
How did the guideline development work begin?
Recognising the need for improved health services and support for our community, in 2022 PANS PANDAS UK established the national PANS PANDAS Steering Group (PPSG). The group brings together representatives from key medical bodies and medical royal colleges, with a mission to address the care available for PANS and PANDAS in the UK.
Early in 2024, as part of these efforts, the PPSG formed the PANS* guideline development group (PGDG).
Who is involved in the guideline development process?
Core members
The PGDG is a multidisciplinary working group of 30 people. Within the group there are medical experts, experts by experience, researchers, guideline experts and an independent Chairperson.
PANS and PANDAS are complex conditions which do not fit neatly within any single field of medicine. Because of this, the PGDG has representatives from General Practice, Paediatrics, Neurology, Immunology, Infectious Diseases, Psychiatry, Psychology and Nursing. The group chose these medical fields because clinicians in these areas are currently most likely to be assessing, diagnosing and treating children and young people with these conditions.
Most importantly, the guideline group wanted to ensure your lived experiences were considered throughout the process. To help this happen, there are patient and parent members of the group as well as a representative from PANS PANDAS UK. Initial consultation was also held with a young adult living with PANS.
Other stakeholders and contributors
Following the correct process when developing clinical guidelines is critical to ensuring the final publication is well-respected and widely used. An important part of this is consulting all relevant stakeholders throughout the development process.
One group of contributors will be panellists for the Delphi process. The Delphi panel will be made up of medical experts and experts by experience, including parents, young people and siblings.
Additionally, a wider group of stakeholders is consulted at key points throughout the process. This includes medical royal colleges and the NHS.
Finally, the PGDG is working closely with a team of researchers (to support with reviewing available research and with running the Delphi process), the Royal College of Paediatrics and Child Health Guidelines team (to ensure the correct methods are followed to have the guideline endorsed by them), and the NICE Guidelines Collaboration team (who will review the final guideline).
What will be covered in the guideline?
We understand that not knowing what the guideline will say is really unsettling and difficult for parents and patients. We also know how worried some families will be about whether the guideline will be a positive step forward, or if it will further limit treatment options and available care. Unfortunately, whilst patient voice is very much an integral part of the guideline development process, the working documents are not made publicly available until publication. This means that specific details of what recommendations will be made in the guideline cannot be shared until they are published.
At a very high level, and like most clinical guidelines, the PANS* guideline will cover; assessment and diagnosis, management, monitoring and review, and education and support. It will apply specifically to children and young people up to the age of 18 and the transition into adult services. Everything which is in the final guideline will be based on the available scientific evidence, or drawn from the pooled experience of experts, including those with lived experience.
The charity team are doing our very best to guide and shape this process, and to ensure that community voice and experience are represented at every stage. However, the charity does not have any more influence over the final recommendations in the guideline than any other member of the PGDG.
What difference will the guideline make?
It is important to acknowledge that PANS and PANDAS are complex conditions with a need for further research to fully understand them. As clinical guidelines must be evidence-based, it is likely that the PANS* clinical guideline will not include everything we and the PANS PANDAS community might wish for at this time.
Understandably, some families may worry that the guideline might make things harder, or that the recommendations made will lead to existing treatments being withdrawn. This may be particularly worrying for families who experienced negative impacts from the 2021 publication of a consensus statement by the British Paediatric Neurology Association (BPNA).
We hope that those families will take some comfort in the following:
- The BPNA have committed to replacing their 2021 Consensus Statement with the PANS Guideline once published. This is important because, despite the publication of statements from the PPSG which replaced the BPNA statement, it continues to be used within some NHS Trusts as the rationale for rejecting referrals for patients with suspected PANS or PANDAS. The removal of this document from the BPNA website, and its replacement with the PANS Guideline, will clarify that the advice within the BPNA CS is out of date and no longer applicable
- Having endorsement from RCPCH, and signposting from NICE, would further validate PANS and PANDAS as distinct medical conditions within the NHS. This will make it easier for families to request appropriate investigations and to challenge outdated assertions that the conditions are controversial or do not exist
- Clear and trusted UK guidelines will improve awareness of the conditions, and clarity about how to assess, diagnose and treat affected patients. This means more doctors will know to consider PANS and PANDAS when they see a patient with the symptoms, and will feel more confident in how to support them. This should lead to earlier diagnosis, better outcomes and reduced delays and unnecessary referrals.
For those families who are currently receiving treatment and are concerned that the new guideline may affect this, it may be helpful to know that clinical 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 practice.
What will PANS PANDAS UK do next?
The forthcoming PANS* guideline will begin to provide improved healthcare for people with PANS and PANDAS, whilst research evolves. It is unlikely to be perfect, but it will be a starting point which will continue to be updated and refined as research improves our understanding of the conditions and how to diagnose and treat them.
Our mission is to ensure that everyone in the UK affected by PANS and PANDAS receives effective and equitable care, and that this is freely available via the NHS. Supporting the development of a clinical guideline is a key stepping stone to making this happen, but our work does not end there. We will continue to advocate for people living with PANS and PANDAS, to encourage research and to call for improved care pathways and support.
