PANS and PANDAS

Maria Caulfield Excerpts

Tuesday 12th September 2023 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

It is a pleasure to serve under your chairmanship, Mr Dowd, and to respond to this debate. To be clear, I can respond only on healthcare services in England, and not on behalf of Ministers in Scotland, Wales and Northern Ireland, because health is a devolved issue. I can, however, give a commitment to hon. Members that I am happy to work with colleagues in the devolved nations on this very important issue.

I welcome the shadow Minister, the hon. Member for Erith and Thamesmead (Abena Oppong-Asare), to her place. It is slightly disappointing that she chose to be so political—I thought we had quite a good cross-party consensus in this debate. I thank the hon. Member for North East Fife (Wendy Chamberlain) for providing the opportunity to raise awareness of paediatric acute-onset neuropsychiatric syndrome, or PANS, and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, known as PANDAS.

We have heard from Members how important the issue is. I thank them for describing the experiences of their constituents and the issues that they have faced. I recently met the chair of the all-party parliamentary group on PANS and PANDAS, my hon. Friend the Member for Aberconwy (Robin Millar), to discuss the lack of guidance on diagnosis, treatment and assessment for children who suffer from either of those conditions, and about the lack of awareness across the medical profession in all parts of the health service. I absolutely agree that we need more research and evidence to improve our understanding of the conditions and to better support the families affected.

[Sir Julian Lewis (New Forest East) (Con)]

The Minister will have heard the excellent speech made by my hon. Friend the Member for South West Bedfordshire (Andrew Selous), who talked about taking it on himself to send leaflets to his GPs to raise awareness. Does the Department have a mechanism for alerting all GPs to these conditions, which seem to be relatively unknown? If so, could GPs be encouraged by her Department to consider prescribing amoxicillin or a similar antibiotic at a very early stage, because that seems to be an almost risk-free option?

[Maria Caulfield]

The Department does not regularly write to GPs because the NHS is operationally independent, but NHS England does and we can certainly speak to NHS England colleagues. They send out regular bulletins on a range of issues to GPs, so I will speak to my primary care colleagues to see whether that is possible. We do not have enough information at the moment about how many children in the UK are affected by PANS and PANDAS. In the US, scientists have suggested that the prevalence there could be as high as one in 200 children.

We have specifically talked about the United Kingdom and England today. Although there is a classification now by the World Health Organisation, very few countries issue guidance on the diagnosis, treatment, assessment and management of PANS/PANDAS, because the scientific evidence is so sparse. When I met my hon. Friend the Member for Aberconwy, we talked about how we can get that evidence base so that we can issue guidance to primary and secondary care providers. We know that symptoms tend to come on suddenly.

We heard from my hon. Friend the Member for North Devon (Selaine Saxby) about the example of Jack and the difference that a diagnosis made. It is often following an infection that children who are healthy and developmentally on track suddenly start exhibiting OCD or other neuropsychiatric symptoms. The hon. Member for Brentford and Isleworth (Ruth Cadbury) is correct that very often a course of antibiotics can improve and tackle some of the symptoms that parents say can change a child overnight such that they can no longer attend school and are suddenly plagued by anxiety and other neurological symptoms.

PANS and PANDAS require a clinical diagnosis based on specific signs and symptoms observed by a clinician. There are currently no lab tests or biomarkers that specifically diagnose those conditions. There is also an element of excluding other diagnoses in the process of diagnosing PANS and PANDAS. That means other illnesses or diseases are considered first rather than assuming it could be PANS and PANDAS.

Although there are currently no national or European clinical guidelines on assessment, investigations or diagnosis, a multidisciplinary team referral often helps speed the process up. That is why we need our primary care colleagues to be aware that this could be the cause of symptoms and to get those referrals in as quickly as possible.

[Ruth Cadbury]

I thank the Minister for her response. She mentions the fact that there is no lab test that can diagnose PANS/PANDAS, but is that not true for other neurological conditions that I mentioned, such as ME and some of the ongoing conditions that people are experiencing from long covid? Sometimes a lab test does not exist because of the nature of what caused the symptoms. Perhaps the medical profession and NHS England need to think slightly outside the box in their search for answers.

[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.