PANS and PANDAS

Debate between Julian Lewis and Maria Caulfield

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.

North East Ambulance Service

Debate between Julian Lewis and Maria Caulfield

Monday 23rd May 2022 Commons Chamber

[Maria Caulfield]

I would like to hear more from the hon. Gentleman about his constituent’s case. I have concerns about what was reported in The Sunday Times. I am concerned that the process followed in investigating those concerns has not got to the bottom of some of the fundamental problems, so if he would like to meet me afterwards I would be very happy to take it further.

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

When senior managers and administrators are found to be directly involved in gross negligence and deliberate cover-ups, will they lose their jobs or will they be allowed to continue?

[Maria Caulfield]

A statutory duty of candour is in place. As I said, if a mistake happens—mistakes can always happen, even with the best prevention methods in the world—there is a statutory duty to reveal it to the family and the patient involved, and to have a full investigation and learn lessons from it. I am concerned that that may not have happened in this case.

Medical Cannabis: Alleviation of Health Conditions

Debate between Julian Lewis and Maria Caulfield

Thursday 4th November 2021 Commons Chamber

[Maria Caulfield]

Absolutely. The Government are committed to trying to resolve the blockage to licensing, which is the main factor hindering the prescription of these drugs. The Health and Social Care Secretary changed the law when he was Home Secretary, but that was not the end of the issue, and that is why we are taking these next steps. It is important not to dismiss the importance of licensed medication. We know from history that when medication that may have a good clinical effect is not tested thoroughly, there can be grave consequences, just as with thalidomide. The safety of a medicine is as important as its efficacy. I am not casting aspersions on cannabis, but the regulator has responsibility for all medicines, and it takes that issue very seriously.

[Dr Julian Lewis]

That argument would surely carry more weight if the people doing the testing outlined some sort of timeline and plan for concluding a testing programme, rather than apparently letting things drift on aimlessly for years on end.

[Maria Caulfield]

I take my right hon. Friend’s point. I will come on to that, and to timelines for the research that is in progress. Many of the products that we are talking about have not been licensed by any licensing authority across the world, including the Food and Drug Administration, the European Medicines Agency and our domestic MHRA. This is not just a UK problem; it is not the UK Government who are holding this back.

As I said yesterday, I encourage manufacturers of these products to invest in clinical trials. Part of the Department’s work is providing funding for the National Institute for Health Research, which is actively opening its arms to charities, academics, researchers, manufacturers and third-sector organisations. Funding is available for clinical trials, if anyone wants to come forward with one, be it a randomised control trial, an observational study, a randomised control trial without a placebo arm, or a phase 1, 2 or 3 clinical study. The MHRA is willing to provide advice and support to any potential applicants who want to conduct a clinical trial or seek a licence for their medicines. There is funding and support; we need researchers to come forward with clinical trials.