A national survey for PANS and PANDAS
It’s time for the UK PANS and PANDAS community to Speak Up
PANS PANDAS UK invite parents and carers from across the UK to take part in a national survey capturing the voices and experiences of families living with PANS and PANDAS.
‘Speak Up: A national survey for PANS and PANDAS’ will gather evidence about the real, lived impact of these conditions on children, families, health, education, and daily life across the country. The data we gather will form a powerful tool, supporting our calls for improved care and support and evidencing the need for change.
Why now?
We believe that 2026 will be a significant year for PANS and PANDAS in the UK. Many of the projects we have been working on for years will reach completion this year and begin to make a tangible difference to families living with the conditions. The anticipated publication of both UK clinical guidelines and guidance for education and social care professionals are key milestones in our journey towards informed and equitable support, but we can’t stop there.
In order to make the strongest possible case for policymakers to implement the recommendations set out in these key publications, and to provide funding for appropriate training, services and research, we need your help.
How will the survey data be used?
The more people who complete our survey, the stronger our evidence base will be. The data we gather will feed directly into two key publications which will underpin our discussions with the Department of Health and Social Care, the Department of Education, the NHS and Local Authorities. They will provide the evidence needed to advocate for better services for people with PANS and PANDAS across health, education and social care.
The first of these publications will be a lived experience report published in collaboration with our parliamentary advocates; the PANS PANDAS All-Party Parliamentary Group (APPG).
The second publication, produced in partnership with the London School of Economics, will be a Cost-Benefit Analysis (CBA), which will clearly set out for the first time the cost of the current variation in care available to people with PANS and PANDAS, both for families but also to the public purse.
What is an APPG lived experience report?
APPG lived experience reports are formal parliamentary reports produced by All-party Parliamentary Groups that put the spotlight on experiences of people directly affected by an issue. They are a recognised way of bringing real world experience into UK parliamentary discussion and policy development.
These reports have parliamentary legitimacy and can be cited by MPs in debates and committee work. Combining statistics, lived experience and professional input, they provide a credible way of presenting the complex patterns of harm that might otherwise go unseen. They provide a consistent and well-documented record of need and systemic gaps and send a strong message to policymakers.
What is a Cost-Benefit Analysis?
A Cost-Benefit Analysis in health is a way of weighing the cost of a service, policy or treatment against its health and social benefits in order to determine whether it represents good value. A CBA for PANS and PANDAS allows us to understand better the current short, medium and long-term costs of the conditions to both families and the Government purse and to model how this might change if care and support provision were improved.
Benefits in healthcare include:
- immediate health outcomes, but also wider health and wellbeing benefits for the patient and their family
- system-level benefits, such as reduced demand on specialist services or fewer hospital admissions
- economic and social benefits, such as reduced school absence, reduced impact on parents’ ability to work, and lower long term care needs.
What difference will it make?
These important documents will help shape the future of care, support, and recognition for years to come, providing solid and irrefutable evidence of the need for meaningful change.
But they will only be as strong as the voices behind them. We are asking you to help us build this evidence base, simply by filling out our online survey. This really matters, and by taking part in this collective effort, you will be helping change the future for your family and for thousands of other families across the country.
I have a few questions …
Why should I fill out the survey?
The more people who complete the survey, the more robust, credible, and powerful these reports will be. Whatever your experience, this is your chance to show the reality;, loudly, clearly, at the right time and with a united front that cannot be ignored.
Most significantly:
- Every response strengthens our narrative
- Every piece of data strengthens our evidence
- Every voice strengthens our case for change.
Who can complete the survey?
This survey is for parents and carers living in England, Wales, Northern Ireland, Scotland and the Channel Islands. There is no age limit on the survey, so even if your child is now an adult, we warmly welcome your insights.
How long will it take to complete?
Because these conditions are complex, in order to be able to accurately and respectfully capture your experiences, the survey is detailed and comprehensive. It will take around 50 minutes to complete and must be done in one sitting, so please ensure you have enough uninterrupted time before you begin.
I’m an adult with PANS or PANDAS, can I fill it in?
This survey is developed to be completed by parents and carers only. If you are someone living with PANS or PANDAS and are now over 25, please consider asking your parent/carer to complete it from their perspective. We will be looking to capture the voices of adults and young people directly in future surveys.
When will the survey close?
The survey will close at midnight on Wednesday 18th February 2026.
How many responses are you looking for?
We are aiming for at least 700 responses, and hopefully even more. Every single response strengthens the evidence we will present to policymakers, commissioners, and leaders who have the power to change the future of care.
Remember:
- Your voice will help us change lives.
- Your voice will help us drive national recognition
- Your voice will help us secure early, effective care.
How else can I help?
You can help spread the word about this important survey by:
- Sharing our social media posts
- Liking and commenting to increase visibility
- Encouraging others in the community to complete the survey.
This really matters and we need your help to make it happen.
