The first official action of the newly reconstituted PANS PANDAS APPG in January 2025 was to write to the Rt Hon Bridget Phillipson, highlighting the importance of improved awareness of PANS and PANDAS amongst education professionals and requesting that the Department for Education attend the next APPG meeting to hear more.

Read the letter in full here.

Early day motions (EDMs) are short proposals to the House of Commons that draw attention to a particular issue, event, or campaign. Members of parliament can support or sponsor EDMs.

Read the motion and see the list of supporters.

We were delighted to see Wendy Chamberlain MP raise a question in Parliament on  PANS PANDAS Awareness Day. More specifically, the question raised was in regard to whether it should be for a charity to fund the research, analysis and pathway needed in order to obtain adequate support for people living with PANS and PANDAS.

Watch the video.

Following this, a meeting was held with the Department of Health and Social Care, Baroness Merron and clinical directors from NHS England to discuss the work underway to improve standards of care available.

Read about this positive meeting.

Thanks to the wonderful efforts of the PANS PANDAS APPG members, a backbench debate on PANS and PANDAS took place in Westminster Hall on Tuesday 12th September, 2023.

Secured by Wendy Chamberlain MP, the debate saw compelling speeches from Members representing all political parties and all four UK nations. Each MP who stood and spoke was in attendance because one or more of their constituents had contacted them asking for help accessing appropriate support for their child with PANS or PANDAS. There was true cross-party consensus that more needs to be done to improve awareness, diagnosis, treatment and support for this cohort of children and their families.

Maria Caulfield MP, Parliamentary Under-Secretary of State for Health and Social Care, attended the debate and listened attentively to the requests put forward by those present. Her response, which acknowledged PANS and PANDAS as discrete disease entities, was welcomed by those in the public gallery, as was her commitment to meet with key stakeholders, drive forward UK-led research, distribute targeted information to GPs via NHS England and to speak to the Education Minister about support in schools.

We are so grateful to all the MPs who made the time to attend or to speak to us afterwards. We are also incredibly proud of our Youth Board for courageously sharing their experiences with Wendy Chamberlain in advance of the debate. Your knowledge and experience shaped the direction of the debate and, no doubt, will help to shape brighter futures for other young people with PANS and PANDAS. Last, but not least, a heartfelt thank you to all those parents and carers who wrote to their MPs, urging them to attend the debate or join the APPG. It really made all the difference.

Please check back here for the latest updates on our progress in Parliament.

A letter written by a group of our incredible Youth Board members was hand-delivered to Maria Caulfield to ask for her support in improving the care and support available to our community.

Our Youth Board members expressed how living with PANS and PANDAS has impacted on their time in education and asked her to keep children with the conditions in her mind as she helps to roll out the new SEND reforms.

• Labour MP Ian Lavery met with a multidisciplinary group of medical professionals to discuss the future of diagnosis and treatment for those suffering from neurological disorders as a result of viral infections. This led to Mr Lavery requesting a Government debate to discuss the diagnostic process for neurological disorders
• Conservative MP Robin Millar mentioned the Strep A surveillance study and requested further discussion to develop a treatment pathway for PANDAS in the UK
• Labour MP Wendy Chamberlain calling on the government to recognise PANS and PANDAS and support NHS-specific recognition and treatment for the conditions