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Political support for PANS and PANDAS strengthens in Parliament

Updated: Sep 20, 2023

The 12th of September was a landmark day for all those living with PANS and PANDAS in the UK. A backbench debate, secured by Wendy Chamberlain MP, was held in Westminster Hall to discuss the conditions and to ask the Parliamentary Under-Secretary of State for Health and Social Care, Maria Caulfield MP, to respond to the issues raised by the other MPs in attendance.

The debate was very well attended by MPs from across the political parties and from all four UK nations. That was in no small part due to the incredible effort from PANS and PANDAS community members to call for their respective MPs to speak on their behalf at the debate. 16 MPs were present, and several more who were unable to attend asked those present to speak for them. In the public gallery, representatives from PANS PANDAS UK and interested clinicians were also in attendance.

The debate saw MPs recount the stories of their constituents, and highlight the current barriers to appropriate, informed and timely healthcare for young people affected by PANS and PANDAS. Wendy Chamberlain spoke movingly of the experiences shared when she met with members of the PANS PANDAS UK Youth Advisory Board. Speakers called upon Maria Caulfield to respond as to how the government intends to improve support and provision for all those with the conditions.

It was heartening to see that there was true cross-party consensus about the importance of improving care for PANS and PANDAS, and to hear Maria Caulfield acknowledge that ‘we have the evidence to sufficiently demonstrate that PANS and PANDAS are discrete disease entities.’ We are even more delighted to hear her commitment to ensuring that those with the conditions get the care they need and to work in collaboration with the PANS PANDAS All Party Parliamentary Group and PANS PANDAS Working Group to move forwards in developing the evidence base through high quality research. We will provide further update once we have heard back from Maria Caulfield confirming her commitments.

If you missed the debate live, you can watch it back on demand here or read the transcript in Hansard by clicking here.

We thank all the parliamentarians who contributed to the debate today and look forward to working together to build brighter futures for everyone affected by PANS and PANDAS.

For more information about the PANS PANDAS All-Party Parliamentary Group please click here.

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