PANS and PANDAS

Ian Lavery Excerpts

Tuesday 12th September 2023 Westminster Hall

[Ian Lavery (Wansbeck) (Lab)]

Thank you for allowing me to contribute to the debate, Mr Dowd. I apologise for being late; I was in an important Delegated Legislation Committee, but I am extremely pleased that the debate is happening and I thought that it was important to try to get here to hear everything that has been said.

I thank the hon. Member for North East Fife (Wendy Chamberlain) for securing this debate to raise awareness of PANS/PANDAS, which sadly continues to be a poorly understood and widely ignored condition. Public awareness of this extremely serious condition remains incredibly low, despite the best efforts of campaigners, who I think we all agree do a brilliant job. Parents and children have to deal with the often severe symptoms of PANS/PANDAS, which are wide-ranging—that is clear from what has been said today—and can cause immense disruption that is difficult to live with. They also face barriers across our health system to get the support they need, as a result of the condition not being fully recognised, or perhaps not being taken as seriously as it needs to be.

I freely admit that I was not aware of the condition until relatively recently, when a constituent approached my office in relation to a child suffering from what she believed to be PANS/PANDAS. The child had been a happy, healthy, normal toddler but, following a bout of chicken pox at a young age, began displaying a number of unusual and alarming symptoms, almost out of nowhere. The symptoms persisted for the next seven years, curiously flaring up with each new infection. Symptoms include high levels of anxiety, aggression, reversion of speech and language, issues around food, obsessive behaviours, and losing the ability to write, among many other things.

Things came to head during the pandemic, when the child contracted covid alongside an infection in his nose. During the nine months that the infection persisted, the child could barely perform the most basic functions. They would get extremely upset and be troubled by persistent anxiety, or become aggressive, angry and destructive. They lost the ability to write, could hardly speak and struggled to eat. That resulted in a sustained period out of school and, as I am sure everyone here can imagine, immense strain and stress on the child and the rest of the family, as they struggled to control the symptoms and feared what could be causing such erratic and disruptive behaviour.

After nine months, the child finally underwent a procedure to remove the infection from his nose, followed by a course of antibiotics. Remarkably, within a week, he was back in school, reading, writing, socialising with classmates and showing every sign of once again being a happy, healthy child.

It is clear from that experience that PANS/PANDAS, or indeed any kind of infection inducing neuroimmune disorder, would be a strong candidate for diagnosis, yet the family have struggled to get the disorder recognised by clinicians and the NHS, never mind getting anywhere near a diagnosis and a treatment plan. A lack of clinical guidelines means that few clinicians across the NHS have even heard of the disorder. As a result, the tests and support the family so desperately need have not been forthcoming. That is despite the condition’s being recognised by countries across the world and by the World Health Organisation.

The struggle to get a proper diagnosis continues for my constituent. It has been suggested to them that the child may be autistic, but that simply does not stack up with the reality of the symptoms and the circumstances in which they appear. A false diagnosis would prolong the issue, potentially causing more complications, further hardship and distress for a family in desperate need of help and support.

My constituent has been forced to resort to seeking the advice of a private doctor here in London. The cost of travel from my constituency in the north-east, accommodation and the appointment itself is immense, and it is made worse by the pressures of the cost of living crisis. Incurring the cost of treatments that have been shown to be effective for fighting PANS/PANDAS is completely out of the question for my constituent and, I am sure, many other affected families across the country.

It is clear from this testimony and hundreds of others that it is time the NHS began to take the condition seriously and get families the support they need. On PANS/PANDAS Awareness Day back in 2020, PANS PANDAS UK claimed that 42% of paediatricians had never heard of PANS/PANDAS, 47% of people with the condition received no NHS treatment, and 95% said their GP did not suggest PANS/PANDAS when presented with their symptoms.

I am not here to chastise the NHS, which does a fantastic job under extremely difficult circumstances. There is an easy solution that can be worked towards to help the NHS to diagnose and treat patients more efficiently, while getting families the support that they desperately need. That would not only help patients and families to get on with their lives, but save us millions of pounds in the long run. Treatments could reduce the need for extra support and care for children and young people experiencing severe symptoms at a relatively low cost, reducing the strain on the NHS and adult social care budgets.

As more and more stories emerge of children suffering from PANS/PANDAS, it is only a matter of time until we can no longer pretend that the condition does not exist or can be explained away elsewhere. Let us put an end to that as soon as possible, get support to the families who need it and reduce the strain on schools, the NHS and social care services, which are all left to pick up the pieces.