PANS and PANDAS

Robin Millar Excerpts

Tuesday 12th September 2023 Westminster Hall

[Robin Millar (Aberconwy) (Con)]

It is a pleasure to serve under you today, Mr Dowd. I congratulate my colleague on the APPG, the hon. Member for North East Fife (Wendy Chamberlain), on securing the debate and on giving such a comprehensive account in her opening remarks. I also acknowledge the work that the hon. Member for Brentford and Isleworth (Ruth Cadbury) has done on the matter here in the House.

As the chairman of the APPG on PANS and PANDAS, I also extend my gratitude to the organisation PANS PANDAS UK. I have had the privilege of working closely with Vicky and the team, and have seen at first hand their tireless efforts as the only charity in the UK that supports children and families living with the conditions. Their advocacy and community support work continue to prove invaluable for patients, carers and healthcare professionals alike.

Like most of us here in Westminster Hall this morning, I was first made aware of PANS PANDAS UK when a constituent contacted me to discuss their case. Separately and much later, a dear family friend contacted me to say that her daughter had also been affected. I recognise many of the descriptions given by the hon. Member for North East Fife of the circumstances that they had to deal with at home. In my speech today I will set out three key issues that have become apparent to parents and interested professionals over the years: first, the misinterpretation of symptoms; secondly, the subsequent misdiagnoses; and, thirdly, the significant problems that such misdiagnoses cause for children with these conditions.

First, according to a survey by PANS PANDAS UK, 95% of GPs do not know about these conditions, and 19% of affected parents said that their paediatrician was aware of these conditions but considered it too controversial to diagnose a child with any of them. As a result, many children with PANS and PANDAS receive multiple diagnoses, often of more widely recognised conditions with overlapping symptom profiles, including anxiety disorders, sensory processing disorders, ADHD and Tourette’s syndrome; some 31% of children with PANS or PANDAS are diagnosed with autistic spectrum disorder. That shows a clear lack of appropriate training for health professionals and means that the wide-ranging symptoms of these conditions are not being recognised as potentially linked to one of these conditions.

Secondly, continued misdiagnoses cause significant delays in the identification of PANS and PANDAS and the provision of effective treatment. Currently, there is no specific test that will prove or disprove the existence of the conditions, so a diagnosis must be made on the basis of an analysis of the patient’s medical history, a review of their current symptoms and a physical examination. Laboratory work and additional testing can be ordered to identify an infectious trigger, rule out other diagnoses and inform treatment plans, but all of that relies upon a clinician’s basic awareness of these conditions.

PANDAS is listed in the international classification of diseases by the World Health Organisation, and two sets of international peer-reviewed treatment guidelines exist. In fact, it is international clinicians currently working in this field who emphasise the importance of early diagnosis of PANS and PANDAS to reduce the risk of patients developing disabling chronic neurological conditions. Understanding the symptoms and detecting them early is crucial to patient outcomes.

Thirdly, we cannot underestimate the strain that these conditions place on parents, families and the children affected. Many families across the UK struggle to access any healthcare provision at all for these conditions on the NHS. In the same PANS PANDAS UK survey of parents that I referred to earlier, 47% of respondents said they had not received any treatment from the NHS and 37% said that, as a result, they have had to seek private healthcare Too often, access to adequate health provision for families depends upon a parent’s ability to carry out research and advocate for their child, and then fund private assessment and treatment.

As we have heard, the misdiagnosis and misinterpretation of symptoms has led to children being sectioned or admitted to psychiatric hospitals, and subjected to treatments that are ineffective, inappropriate or harmful. Families who have been rejected for referrals, or bounced between doctors and psychiatrists who are reluctant to consider a PANS PANDAS diagnosis or who are unaware of the conditions, must either watch their children deteriorate or somehow scrape together enough money to consult someone who has appropriate experience in the field. Private and overseas treatment must not be the only viable option for appropriate care in a nation that rightly prides itself on having an inclusive and accessible health service.

It is evident that significant change is needed in the UK to ensure that children receive timely and accurate diagnosis and the appropriate treatment and support that they need. We know that the underlying cause of PANS and PANDAS is suspected to be an abnormal immune and inflammatory response to infection, so my first request is that research into post-infectious disorders is given adequate funding and is accelerated across the UK. That is necessary if we are to see an improvement in the training and guidelines given to clinicians regarding these conditions.

Secondly, as the PANS PANDAS working group, we are pressing for the swift development of a UK-wide consensus on the treatment of children presenting with acute-onset neuropsychiatric symptoms. As I have already highlighted, without appropriate training and guidelines, UK clinicians are currently ill-equipped, so thirdly, we need to prioritise the development of clinical pathways to ensure that children and families do not continue to suffer as so many have suffered already.

I thank the UK Health Minister who is here today, the Under-Secretary of State for Health and Social Care, the hon. Member for Lewes (Maria Caulfield), for her interest and I invite her to meet members of the APPG, PANS PANDAS UK and representatives of parents to hear their experiences first hand. Listening to the experience of patients is the first step in ensuring both that they receive the support they deserve and that we can secure the changes that are needed.

--- Later in debate ---

[Maria Caulfield]

I absolutely agree with the hon. Lady. NHS England has been happy to work on such issues with the working group. It is embarking on work to roll out a nationwide surveillance study designed to identify the signs and symptoms because, again, it is probably unlikely that we will reach a definitive test that will ever give us a diagnosis, and it is about matching symptoms with a diagnostic criteria. NHS England has committed to doing that, and the Department is happy to support it in its work.

There is the issue about how quickly antibiotics should be prescribed and dispensed, but while one antibiotic may work for one child, it may not work for another, and it is sometimes a case of trial and error before the appropriate treatment is found. Although there is an evidence base for the treatment of symptoms, such as obsessions, compulsions and tics, it is recommended that children and families affected should be offered evidence-based treatments. That is why we absolutely need to build that research base to provide evidence-based guidance to clinicians, whether they are in primary or secondary care. At the moment, NICE says that it does not have the evidence base to put that guidance together, whether that relates to psychological treatments or to medications such as antibiotics. The commitment I can give today is to push and work with the working group, organisations and Members in this place to try to develop that research base.

[Robin Millar]

I have been struck by a couple of things in the debate—one is the cross-party consensus, but another is the uniform distress that Members have relayed. On the point the Minister just made about whether treatment is psychiatric or medical, one of the key points is that PANS/PANDAS is often confused as being psychiatric when it is an infection that has proven susceptible to treatment with antibiotics. That is the kind of basic step forward that we are hoping for today.

[Maria Caulfield]

I absolutely agree. I acknowledge that while the symptoms mimic a mental illness, there is very often a physical cause for those developments. That is why we need to build that evidence base with research to back the guidance that we can give to clinicians who, as colleagues have said, may not be aware of the condition or how to manage it.

Training on PANS is now included in the Royal College of Paediatrics and Child Health curriculum. In April 2021, the British Paediatric Neurology Association issued a consensus statement with the faculty of child and adolescent psychiatry at the Royal College of Psychiatrists. Following concerns about variation in how it was being interpreted across the UK, the new PANS PANDAS working group, as we have heard today, which is being supported by NHS England, issued a statement recommending the development of appropriate service models and pathways back in February. I am keen that we support the working group in its important work bringing the key organisations together so that we can get that consensus out to clinicians in the field.

The work that the working group has done highlights that all children presenting with acute onset neuropsychiatric symptoms should receive a full medical evaluation and signposts clinicians to existing international peer review treatment guidelines. As I have said, while NICE currently has no plans to issue guidance, should the evidence base develop further, and should there be an opportunity to do that, we would look to update clinical policy. NHS England would then consider the development of care pathways for those living with PANS/PANDAS. The key is building that evidence research base.

We have the evidence to sufficiently demonstrate that PANS and PANDAS are discrete disease entities. I hope that answers the question by the hon. Member for North East Fife on whether we recognise that. We absolutely do, but we do not have the evidence and research base on assessment, diagnosis, treatment and management. However, the Department is funding research into rare diseases through the National Institute for Health and Care Research, which is spending over £1 billion a year every year on research particularly into rarer conditions. It welcomes funding applications for research into any aspect of human health, which would include PANS and PANDAS. Applications are subject to peer review and judged in open competition, with awards made on the basis of importance to the topics of patients, health and care services.

The National Institute for Health and Care Research does not just provide funding; it will also provide guidance, whether for academics, clinicians, researchers, the working group, charities or any other organisation. I am happy to organise introductory meetings with the National Institute for Health and Care Research. It has met other groups to explore the types of research it would support and that would build an evidence base. I strongly encourage researchers with an interest in this area to come forward with proposals so that we can develop that evidence base and make real inroads.

Other countries are not necessarily leading the way. Not many countries have international guidance on the issue. I cannot remember which hon. Member referred to this, but the UK and the devolved nations have an opportunity to take a lead, build that evidence base and develop guidance on that basis.

I assure colleagues that I am committed to ensuring that those with PANS and PANDAS get the care they need. We need more high-quality research into these conditions. That is the only way we can get better outcomes for patients. I am happy to meet both the APPG and the working group to take this forwards, because there is an opportunity to develop our knowledge, increase awareness and ultimately to have better outcomes for those children affected.