Ms Julie Minns

I thank the hon. Member for North East Fife (Wendy Chamberlain) for introducing the debate so well. It is always a pleasure in this place when I discover that I have something in common with Members from across the House. In recent months, the hon. Lady and I have discovered that we share an interest and passion for Jane Austen and hard agree that the BBC 1995 production of “Persuasion” is by far the superior, but more importantly, that we share an interest and desire to improve the diagnosis, understanding and clinical treatment of people of all ages who are living with PANS/PANDAS. I first became aware of PANS/PANDAS when my constituent Joanne came to see me about her son Jake shortly after my election. Jake has lived with PANS/PANDAS for more than six years. For a period of time, treatment was effective, and NHS continuing healthcare funding enabled Jake to access the care of a specialist immunologist. However, despite the progress that had been made, the family have since faced repeated challenges in securing the treatment and funding, resulting in uncertainty, stress and significant personal expense. I therefore appeal to North East and North Cumbria integrated care board to please help urgently resolve these issues, and I have an outstanding query with the ICB on exactly this point. Joanne has worked tirelessly to advocate for her son, yet she continues to encounter delays, poor communication, a lack of clarity, and uncertainty about funding—a story all too typical of families trying to support a family member living with PANS/PANDAS. While this case is deeply personal, it also highlights the wider challenges faced by these families. Too often, parents like Joanne find themselves navigating complex systems, spending years seeking access to appropriate care and treatment, all while battling for recognition of their child’s condition. It was thanks to Joanne that I had the privilege of meeting members of the PANS PANDAS youth board when they visited Parliament in April. As has been said, they shared their personal stories with me and other parliamentarians. I welcome them again in Parliament today. I welcome the Government’s work with the royal colleges, specialist clinical bodies and PANS PANDAS UK on the development of clinical guidelines. In her remarks, will the Minister indicate when the Government expect to publish the first UK clinical guidelines for PANS and PANDAS? The guidelines should, I hope, result in a clearer and more consistent framework and recording of these conditions. Without an official diagnostic pathway and reliable data collection, it is difficult to understand how many children and young people are affected, the scale of the unmet need, or to ensure that appropriate services are available. Better recognition and data would therefore not only support future research and service planning, but help ensure that families like Jake’s receive timely, co-ordinated and compassionate care.