Neuropsychiatric Conditions: PANS and PANDAS

Neil Shastri-Hurst Excerpts

Thursday 25th June 2026 Commons Chamber

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

It is a privilege to respond to the debate on behalf of His Majesty’s loyal Opposition. I pay tribute to the hon. Member for North East Fife (Wendy Chamberlain) for securing the debate and for setting out the landscape facing those with PANS/PANDAS in the UK, as well as recognising the lack of knowledge about the conditions and the challenge that presents. I thank her for her sustained work through the APPG on the issue.

Many right hon. and hon. Members have contributed to the debate. The hon. Member for Carlisle (Ms Minns) spoke movingly about Joanne and Jake, who have been living with PANS/PANDAS for the past six years, and the challenges of not getting the treatment or the funding that they need. The hon. Member for Henley and Thame (Freddie van Mierlo) made a good point about how those affected do not want sympathy but action. He talked about the excellent campaigning by Albie, who is in the Gallery today, following his brother’s diagnosis—I suspect Albie’s handwriting is somewhat better than my doctor’s scrawl and I commend him on his campaigning. The hon. Member for Harlow (Chris Vince), who is always keen to speak up and champion issues on behalf of his constituents, spoke about the importance of guidance. My right hon. Friend the Member for New Forest East (Sir Julian Lewis) talked about the importance of the early use of antibiotics.

Above all, I want to speak directly to the families and children who are following the debate and who live with PANS/PANDAS every day, some of whom are with us in the Gallery today. For them, this is not an abstract discussion about guidance, systems or clinical pathways; it is about the child they love, the moment something changed and the exhaustion of trying to explain that change to people who may never have heard of the condition before. It is about parents who overnight become advocates, researchers, case managers and campaigners, while simultaneously trying to hold their families together, and about the children and young people whose lives can be altered suddenly and terrifyingly.

As we have heard, PANS/PANDAS sit at the intersection of neurology, psychiatry, immunology and infectious diseases. That matters because they do not fit neatly into one service, specialty, clinic or budget line. For the children affected, symptoms can be sudden and severe. They include obsessive-compulsive behaviours, restricted eating, tics, anxiety, behavioural change, sleep disturbance, regression, movement difficulties, school refusal and distress that can overwhelm the entire family.

For some families, the story is stark. A child who was settled and sociable becomes frightened, withdrawn and unable to eat. A child who was thriving at school begins to struggle. Families find themselves moving from GPs to child and adolescent mental health services, from paediatrics to emergency departments, and from school meetings to safeguarding conversations, often without a clear pathway or a clinician who is able to say, “Do you know what? I recognise this, and this is what we need to do next.”

The first task before us is to diagnose the problem honestly. The problem is not that every scientific question has been answered, because clearly it has not. There is uncertainty and professional disagreement, and there is a need for stronger evidence, better data and more research into diagnosis, treatment and long-term outcomes. However, uncertainty has too often translated into inconsistency. It has meant too many families left without a clear answer, too many clinicians left without guidance, too many schools unsure of how to respond and too many children caught between services. Each see part of the picture, but they do not see the child as a whole.

At present, there is no official NHS clinical guidance for the diagnosis and treatment of PANS/PANDAS. NICE has previously concluded that the evidence was insufficient to provide useful guidance. The Government have said that data on the number of children affected is not currently collected, because internationally the criteria cannot be agreed. Local integrated care systems are expected to plan services, but they are asked to do so without consistent national direction, which risks variation.

As we have heard, in reality variation leads to a postcode lottery. It means that one family may find an informed GP, paediatrician or neurologist, while another family is left scrambling for help. It means that one school may understand the sudden onset and fluctuating need, while another school sees only challenging behaviour. It means that one parent may feel believed, while another parent feels blamed. That is the difficulty at the heart of this debate.

PANS/PANDAS cut across the way our systems are organised. The NHS is still too often structured around separate silos, whether it is mental health, neurology, infectious disease, immunology or paediatrics, but children living with these conditions do not arrive in neat administrative categories; their needs are complex, sudden and overlapping. That makes it hard for families to know where to turn, as well as for clinicians who want to help but may not have had the training to do so, and for schools that see a child’s behaviour change dramatically without understanding what is driving it.

We must also be candid about the emotional difficulty. Parents can feel dismissed. They can feel treated as difficult or seen as overanxious when they are simply trying to explain what has happened to their child. No child should be left waiting for help because the system is unsure about where they fit. The previous Government did not solve this issue, but foundations were laid through the UK rare diseases framework, annual action plans and engagement with research, including with the APPG and the working group.

The current Government have welcomed clinical guidance being developed by PANS PANDAS UK and have said that NICE will consider national guidance as evidence improves. They have also pointed to NIHR research and extended the rare diseases framework into 2027. Where the Government do the right thing, we should welcome it, but the question is whether those actions are sufficient. Do they need to go faster? Are they reaching the families on the ground?

Families do not experience this as a framework, action plan or written answer; they experience it as the moment when a child refuses food, compulsions appear, school attendance collapses or a parent is told that a professional has never heard of the condition. If the problem is complexity, inconsistency and a lack of recognition, the solution must be equal in its seriousness. The foundations have been set, and now we must all go further.

We need action on guidance. The clinical guidance being developed by PANS PANDAS UK and the PANS guideline development group brings together expertise from general practice, paediatrics, neurology, immunology, infectious diseases, psychiatry, psychology and nursing. I would be grateful if the Minister could set out how the Government will engage with that guidance once it is published. Will she commit to a clear process for assessing emerging evidence?

We also need to take action on professional awareness. I recall reading about these conditions in Kumar & Clark when I was a medical student, but I do not recall receiving any formal training on them. It is not enough to ask our clinicians to be responsible for keeping their knowledge up to date; atypical, complex and contested conditions require practical support. As such, I ask the Minister to consider an awareness package for frontline professionals, developed in conjunction with clinicians, families and experts. We also need action on data and research—we need better data, diagnostic clarity, and research into treatment and long-term outcomes. With that in mind, I would appreciate the Minister setting out how the Government intend to support that work and encourage greater patient involvement.

There is also a need for greater consistency across local systems. If support is left entirely to local discretion, care will depend on where a family lives or how hard they are able to fight for it. Clearer information on how suspected cases can be supported across specialties should be available to ICBs, and schools also have to be part of the answer. For many families, school is where the change is first noticed; better awareness of sudden onset and fluctuating symptoms could help ensure sensible attendance policies and flexible, rapid and responsive classroom adjustments.

This debate should not be one that divides the House, but one that unites it. There will be different views on the evidence, on treatment and on guidance, but there should be no difference between us on the need for children to be seen, for families to be heard, for clinicians to be supported, and for care to be based on evidence, rather than the accident of geography. For families living with PANS/PANDAS, progress will be measured by whether the next family gets an earlier answer, whether the next child is believed sooner, whether the next GP has somewhere to turn, and whether the next school understands. That is a fair and compassionate standard, and it is the one that the Government should now meet.