PANS and PANDAS

Debate between Maria Caulfield and Ruth Cadbury

Tuesday 12th September 2023 Westminster Hall

[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.

Oral Answers to Questions

Debate between Maria Caulfield and Ruth Cadbury

Tuesday 6th December 2022 Commons Chamber

[Maria Caulfield]

I thank my hon. Friend for all her hard work in this space and for leading our debate on childhood cancer outcomes in this Chamber. I was delighted to meet her constituent Charlotte, who is campaigning so hard on the issue. I promised her that we would look at a child cancer mission; we will update the House on our progress shortly.

[Ruth Cadbury (Brentford and Isleworth) (Lab)]

6. What progress his Department has made on its commitment to recruit 6,000 additional GPs by 2024.

Oral Answers to Questions

Debate between Maria Caulfield and Ruth Cadbury

Tuesday 19th July 2022 Commons Chamber

[Maria Caulfield]

I am very sad to hear of the experience of my hon. Friend’s constituent and he is right to say that emergency services need to be able to access public areas. I am happy to talk to him about that afterwards to see what more can be done.

[Ruth Cadbury (Brentford and Isleworth) (Lab)]

“24 hours in A&E” was a reality TV programme but now it appears to be the reality for far too many people. The zero tolerance standards on 12-hour A&E waits and 30-minute ambulance handover delays are being systematically and seriously breached. So when do the Government plan to achieve those standards, which were set and delivered by the Labour Government?

[Maria Caulfield]

Let me place on record my thanks to all the ambulance staff up and down the country who have gone above and beyond in the past 24 to 48 hours to be able to respond to extreme pressures that are only really seen in winter times. Let me give a scale of the pressures they are under. Compared with the situation in May last year, there have been over 100,000 more calls to the ambulance service, and there were 2.1 million attendances at A&E departments in June, which is 3.6% higher than the figure for June 2019. So they are under incredible pressure, and I pay tribute to all of them doing their best.