Protecting vulnerable voices
Many members of the PANS and PANDAS community will be aware of the potentially fundamental changes and discussions occurring due to educational reforms currently underway. These could have a direct impact on families, young people and children living with PANS or PANDAS.
Significantly, the Children’s Wellbeing and Schools Bill, which is currently at the committee stage, could adversely affect the PANS and PANDAS community.
PANS PANDAS UK has taken proactive steps:
1. PANS PANDAS UK created a detailed response to the potential Bill, along with a timeline outlining our ongoing engagement with both education and health policy.
2. MP Wendy Chamberlain, Chair of the All-Party Parliamentary Group (APPG), circulated this response to the PANS PANDAS APPG, all wider MPs and selected members of the House of Lords.
For more information regarding the potential impact of the Bill, we signpost our community to Michael Charles, Senior Director and Chief Executive Officer for Sinclairslaw. Mr Charles is active on a number of social media channels, and is aware from previous workstreams with the charity about the condition-specific vulnerabilities.
Other concerning developments
The Children’s Wellbeing and Schools Bill is not the only current development raising concern. In a recent Schools Week article, Dame Christine Lenehan, Strategic Advisor for SEND, revealed that the government is considering proposals that could significantly alter the current education system.
These include limiting Education, Health and Care Plans (EHCPs) to children in specialist schools and potentially removing the health and social care components altogether.
How to get involved
While these discussions are still in the early stages, we recognise that such proposals are understandably worrying. Many members of the community will want to ensure their voices and lived experiences are heard as these conversations progress.
One impactful way to contribute is by meeting with your local MP to discuss these issues directly. You can find your MP’s contact details here. Many advocacy groups also offer helpful resources, including information on relevant legislation such as the Equality Act 2010, the Education Act 2002, and the Children and Families Act 2014, which can support your conversations.
“There are several advocacy-focused organisations, Government petitions, and initiatives that we encourage you to explore, support, and share within your networks. These efforts are essential to raise awareness of PANS and PANDAS and ensure the conditions are recognised within current education and policy discussions.”
– Tina Coope, PANS PANDAS UK Education Lead
Representing PANS and PANDAS
As a small charity, we focus our efforts on carefully selected, high-impact opportunities to influence national policy. Through sustained advocacy and collaboration, we have secured representation on several key national forums, including the Council for Disabled Children, the Health Conditions in School Alliance, and the Children and Young People’s Parent, Carer, Families Network. These achievements reflect our long-standing commitment to building meaningful relationships with influential organisations.
We would like to thank all of our members for their continued engagement, support and continued advocacy on behalf of the community. We believe in the power of collective action and encourage our community to get involved and to be aware of the current agendas in education, and where possible to support each other to help drive meaningful change.
