Ask your MP to attend the YAB roundtable

We need your help! Please ask your MP to attend the Youth Advisory Board roundtable and the upcoming backbench debate.

Families affected by PANS and PANDAS have written to their Member of Parliament (MP) many times, and we know how exhausting that can feel. But right now, for the first time, real national change is within reach. That is why we are asking our community to contact their MPs once more and urge them to attend the Youth Advisory Board roundtable on 15th April, and the backbench debate, expected to follow shortly afterwards in the Chamber of the House of Commons.

For years, families have fought for recognition, research and fair access to care. Now a series of major developments means we are finally on the cusp of meaningful progress:

National treatment guidelines are approaching

Work is now underway to develop a UK clinical guideline for PANS and PANDAS, with publication expected in Autumn 2026. This is a vital step toward ending the postcode lottery in healthcare, creating consistent standards of assessment and treatment across the country.

Local Authority guidance is coming

Guidance that will help schools and services meet their legal obligations to children with PANS and PANDAS is anticipated in Summer 2026. This could transform how children are supported in education, reducing unlawful decisions, barriers to assessments and inconsistent provision.

NIHR has funded a recent evidence synthesis

The NIHR funded an Evidence and Gap Map that highlights the urgent need for more robust research into effective treatments. This has placed PANS and PANDAS squarely on the national research radar and has strengthened the case for further investment.

PANS and PANDAS are still ranked in the James Lind Alliance top 10 research priorities

PANS and PANDAS sit within the top ten unanswered research questions in paediatric neurology. This reflects the national recognition of the scale and seriousness of the conditions.

NHS recognition of PANS and PANDAS

NHS clinical directors recently provided the following statement “Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) are recognised as clinical syndromes […] We welcome the collaborative work that the PANS PANDAS Steering Group is undertaking with professional bodies and those with lived experience to increase the evidence base in this area.”

Together, these developments mean we are more perfectly positioned than ever to push for real change.

What can my MP do?

Although PANS and PANDAS are national issues, they are also deeply local ones. PANS PANDAS UK is already supporting over 8,000 families, and because awareness is still so low, it is highly likely that many more affected children have not yet received a diagnosis. That means every MP has children and families in their constituency who are affected, even if they do not yet know it.

It is essential that MPs hear the realities faced by children and families in their constituencies.

“You have written emails, chased referrals, gathered evidence and explained the same symptoms again and again, while also being there for your loved one through their most frightening moments. You should not have had to do any of this. Yet, your determination has helped us reach a turning point, one that finally offers genuine hope.

Your voice has already helped us make extraordinary progress. This final push could help secure the national change that children and families have spent years fighting for.”

– Vicky Burford, our CEO

What will the Youth Board be doing?

Members of our Youth Advisory Board will attend the roundtable to share their lived experiences directly with MPs. These young people speak with honesty, courage and insight about the challenges of accessing healthcare, navigating education and living with conditions that remain misunderstood.

Their voices are powerful, but they need MPs in the room to hear them. Can your MP be in the audience?

Our Youth Board suggested talking directly to MPs, stating it as one of the top priority activities this year. They collaborated with the charity on a briefing document for all MPs, shared prior to the debate. This briefing, and the compelling testimonies they will bring to the roundtable, provides MPs with the perspective of our young people, alongside your feedback from our ‘speak-up’ community survey. Together, this real-life data will powerfully evidence the impact of PANS, PANDAS and current lack of awareness or adequate healthcare provision.

We expect the backbench debate to take place a few weeks after the roundtable. As soon as we receive confirmation of a date, we will update the community.

This debate is a key opportunity to:

Urge the Government to end the postcode lottery in diagnosis and treatment through standardised care

Call for mandatory training for healthcare professionals

Push for greater research funding to fill crucial evidence gaps

Highlight the importance of forthcoming Local Authority Guidance in protecting children in education

What can I do to help?

Your voice can make the difference between an MP deciding to attend these crucial events or overlooking them. When MPs hear from constituents, they listen.

Please write to your MP and encourage them to:

Attend the Youth Advisory Board roundtable on 15th April 2026

Attend and speak at the upcoming backbench debate representing families in their constituency

We have provided template letters to make this as simple as possible for you.

From a young person

From a parent or carer

Find your MP

Use the drop down boxes to find out more about the parliamentary visit, the crucial debate, and how you can encourage your MP to attend.

What is a roundtable?

A MP ’roundtable’ is an in-person meeting with stakeholders including MPs and experts by experience. It is a unique and powerful opportunity for collaboration and awareness raising.

What is a backbench debate?

Backbench debates provide an opportunity for MPs to raise awareness, influence policy and put their – and our – views on parliamentary record. Often, these debates are the first time a particular subject has been recognised, or spoken about, in parliament; making them a highly important event for us and our community.

What will happen at the roundtable?

Young people between the ages of 8 and 26 from our youth board will be sharing their experiences of living with PANS and PANDAS with their MPs. Some will be presenting to the MPs collectively and others will be speaking to MPs individually. The more MPs who attend, the more impact this event will have.

Is the backbench debate definitely happening on 16 April 2026?

As soon as we receive confirmation of a date, we will update the community. Due to parliamentary restrictions, debates which take place in the Chamber of the House of Commons cannot be booked far in advance. We expect the backbench debate to take place a few weeks after the roundtable.

As soon as we have more information we will let you know by updating the APPG page on website, and posting on our social media platforms.

Can members of the public watch the debate live?

Yes, members of the public can attend any debate which happens in Parliament from the public gallery. Entry is free of charge. Strict security procedures and queueing rules apply. The starting time of the debate may also vary depending on parliamentary matters, so be prepared for a long wait.

If you wish to attend in person, please visit the parliamentary website for information about how to do this.

The debate is also filmed and streamed live on parliament.tv so you can watch the debate from the comfort of your own home.

Will there be any follow up after the debate, so we know what was said?

Yes, we will provide a summary news update shortly after the event with outcomes and actions which will be available on our website. We will also share this information via our social media channels. In addition, the full transcript of the debate will be available to view on hansard for those who wish to dig a little deeper.

Why should I write to my MP again, especially if I have written many times before?

Because the more MPs who hear directly from our youth board, the more meaningful the backbench debate will be. We are urging the Government to end the postcode lottery in diagnosis and treatment through standardised care, calling for mandatory training for healthcare professionals, greater research funding to fill the crucial evidence gaps made clear by the evidence synthesis work and signposting to the forthcoming treatment guidelines and local authority guidance.

Is there a template letter I can use?

Yes, we have provided a template letter for caregivers to use, and also a template letter if your child or young person wants to write directly. You can find these template letters on this page, or on our APPG page.

How can I find out who my MP is, and how to contact them?

You can find out who your MP is by clicking this link and popping in your postcode. This will provide you with all the details you need to contact your MP.

What should I do if my MP has never responded to previous messages?

Please do write again and follow up by telephone. Your MP should respond to every single message sent by a constituent.

Should I ask for a meeting with my MP, or is writing enough this time?

With the short turnaround, it may not be possible for you to meet with your MP prior to the event. However, if you are able to, this would be particularly helpful, as a face-to-face meeting is always more memorable and impactful.

Were adults with PANS or PANDAS included in these discussions?

Yes, we have a number of young adults on our youth board, and they will represent adults with the conditions on the day. We ensure that adults living with PANS and PANDAS are included in all our interactions.