Neuropsychiatric Conditions: PANS and PANDAS

Susan Murray Excerpts

Thursday 25th June 2026 Commons Chamber

[Susan Murray (Mid Dunbartonshire) (LD)]

I am grateful to my hon. Friend the Member for North East Fife (Wendy Chamberlain) for securing this debate, and for all her work to raise the profile of these childhood conditions. I also thank the Backbench Business Committee for selecting this topic for debate.

As she said, my hon. Friend first raised PANS/PANDAS in this House more than three years ago and has pushed for change ever since. Indeed, I was pleased to meet the impressive PANS PANDAS UK youth board on their visit to Parliament. For families, the onset of PANS/PANDAS is often sudden and deeply distressing. A child who was well one week can, the next, be gripped by anxiety, tics or obsessive behaviours. What follows is too often not treatment, but a search from GP to specialist and back again for someone who can provide a diagnosis.

Almost three years ago, my hon. Friend asked the Government for a small number of reasonable things. I am sorry to say that families still have not seen the change that they are entitled to expect, but I hope that what we heard earlier means that it will be coming soon. The Department of Health and Social Care has said that it does not hold data on how many children are affected, and NICE has not yet produced guidance, after concluding there was insufficient evidence to produce useful guidance. Clinicians are still left without a clear national pathway to follow, even if they are aware of the conditions.

The result, as we have heard, is a postcode lottery. A survey for PANS PANDAS UK found that just 2% of families said their GP even considered PANS/PANDAS as a possibility for their child’s symptoms. Families who can pay go private to see specialists; children whose families cannot pay, lose their childhood, miss school and fail to thrive. Such delays are not administrative inconveniences; they are a risk to children’s lives. According to PANS PANDAS UK, 43% of parents say that their child has talked about taking their own life, and 61% say that their child has expressed a desire to no longer be here. These are young children, made desperately unwell by a treatable condition, yet they are waiting months or years for someone simply to recognise what is wrong.

There are two mothers in the Gallery today, one from my constituency of Mid Dunbartonshire, and one from just next door. Both have been forced to spend significant sums of their own money on diagnoses and treatment, including travelling down to London to see specialists in private clinics. As we have heard, that is not unusual. Nearly a third of affected families report a financial impact of more than £50,000, and one in eight report an impact of more than £100,000, simply to get their child diagnosed and treated. We have a system in which a recognised diagnosis is reserved for those who can afford to pay for it, and those who cannot are often left behind.

Two weeks ago, my Liberal Democrat colleague Adam Harley MSP, who represents many of the same families that I do, raised one of the cases with the First Minister in the Scottish Parliament and called for properly recognised NHS guidance. Health is a devolved matter, but families across Scotland face the same barriers as families anywhere else in the UK, and they frequently end up in England to access treatment. Has the Minister had any discussions with the Scottish Government on taking a unified approach to tackling the issue? Given that we are expecting clinical guidance to be released in August, I am sure that families in Scotland would greatly appreciate co-operation between the Governments in Holyrood and Westminster to help bring the postcode lottery they currently face to an end.

PANS/PANDAS are treatable conditions, and children can get their childhood back. To make that happen, I urge the Government to help plug the current gaps in evidence and knowledge around these conditions, including the number of children affected, through supporting research. The Liberal Democrats have called for an increase in research and development spending to 3.5% of GDP to help drive British research, to develop a greater understanding of conditions like PANS/PANDAS, and to evidence the efficacy of available treatment.

An effective treatment can change a child’s life—children like Isa and Hugo—for as little as £9. Effective diagnosis and treatment will save the NHS money. Our NHS was founded on the idea that it would treat according to need, not ability to pay. Sadly, in the case of children with PANS/PANDAS, too often that principle is not being upheld. Families simply trying to find treatment for their children are being failed and we must rectify that, wherever in the UK they live.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I call the shadow Minister and welcome him to the Dispatch Box.