Mrs Sharon Hodgson

“I thank the hon. Member for North East Fife (Wendy Chamberlain) and the Backbench Business Committee for bringing forward today’s debate. I think we can all agree that, although the number of attendees has been small, it has been mighty in terms of the quality of contributions we have heard from hon. Members. I am also grateful for the opportunity to speak today on the subject of PANS/PANDAS. As hon. Members have highlighted, these conditions cause significant distress to many children and young people and their families. It is therefore vital that we approach this issue with both scientific care and genuine compassion, recognising and responding to the lived experiences of those affected. We have heard from hon. Members today about some of those experiences, and I thank them all for their contributions. As we have heard, PANS and PANDAS are closely related, but distinct, clinical syndromes in which an infection can trigger acute and often dramatic changes in both physical and mental health—often as quickly as overnight, as we heard from the hon. Member for North East Fife. They are areas of evolving clinical understanding, with diagnosis based on observed signs and symptoms rather than definitive tests. That means that it is typically a diagnosis of exclusion, requiring clinicians to rule out other causes. While this can make diagnosis complex, it underlines the importance of a holistic, joined-up, child-centred approach. Treatment is similarly tailored and delivered through multidisciplinary teams, with psychological therapies such as cognitive behavioural therapy commonly used to manage symptoms, along with pharmacological interventions where appropriate. Alongside clinical interventions, supportive care is essential. This includes helping families to understand the condition, supporting school attendance where possible, and ensuring access to appropriate mental health services. Effective care requires co-ordination across services to provide consistent and holistic support. We recognise the challenges that families face—I welcome the families who are in the Gallery today—particularly as these conditions can sit at the intersection of physical and mental health services. Good clinical practice emphasises the importance of a holistic and multidisciplinary approach, including close collaboration with parents, schools and other agencies. However, the absence of definitive biomarkers and fully understood mechanisms has contributed to a variation in how care is delivered. In response, NHS England began working in 2020 with the charity PANS PANDAS UK, which I commend on its work in this area to improve awareness, understanding and care. This led to the establishment of the PANS/PANDAS steering group, which brings together representatives from key royal colleges, specialist clinical bodies and the charity sector. The steering group has since progressed several important initiatives. First, work is under way to develop the first UK clinical guidelines for PANS and PANDAS, led by a multidisciplinary group and supported by the Royal College of Paediatrics and Child Health. My hon. Friend the Member for Carlisle (Ms Minns) asked me about timelines for that guidance. I am happy to tell her today that those guidelines are expected to be published in autumn this year, and they will support more consistent care across the system. Until then, clinicians are advised to draw on existing international guidance, including the Nordic clinical guidelines, which were published in 2021. Secondly, a dedicated research group is advancing efforts to strengthen the evidence base, including through a nationwide surveillance study. Thirdly, a cross-sector group is developing practical guidance for local authorities to improve support for children and young people living with PANS and PANDAS. That guidance is due to be published later this year, and it will ensure more consistent access to appropriate educational and social care services. As we have heard today, clear and consistent frameworks are essential to improving co-ordination across services and strengthening recognition of PANS and PANDAS. NHS England’s forthcoming children and young people’s modern service framework will address health system challenges that affect all children and young people, improve access to specialist advice, promote more integrated working across physical and mental health services, and strengthen the strategic commissioning role of integrated care boards. More widely, NHS England is also supporting local systems to implement neighbourhood multidisciplinary teams, bringing together professionals across health and social care and wider services to deliver joined-up, community-based care, ensuring that all children and young people can access co-ordinated support and paediatric expertise closer to home. The Lib Dem spokesperson, the hon. Member for Mid Dunbartonshire (Susan Murray), asked me about discussions with the Scottish Government and devolved Administrations. I understand that there have been no direct discussions so far, so I commit that, following this debate, my officials will engage and raise this issue with devolved Government counterparts at the next opportunity. Alongside these developments, there remains a clear need for high-quality research, and this includes improving understanding of the underlying causes of PANS and PANDAS, refining diagnostic criteria and building stronger evidence on the effectiveness of different treatments. The Department supports research through the National Institute for Health and Care Research, and we welcome applications across all areas of health, including for these conditions. Recent collaborations include the “PANS PANDAS Unveiled” project, which completed an evidence and gap map on the epidemiology, prevalence, treatment and experiences of PANS/PANDAS. In the meantime, integrated care systems are responsible for planning services for their populations and should continue to draw on emerging evidence and guidance to improve care and outcomes.”