PANS and PANDAS

Andrew Selous Excerpts

Tuesday 12th September 2023 Westminster Hall

[Andrew Selous (South West Bedfordshire) (Con)]

It is a pleasure to serve under your chairmanship, Mr Dowd. I am grateful to the hon. Member for North East Fife (Wendy Chamberlain) for bringing the debate to the Chamber.

Like all Members who have spoken, I am grateful to the PANS PANDAS UK charity for its definition of paediatric acute-onset neuropsychiatric syndrome. It helpfully describes it in a leaflet as a syndrome that

“involves a misdirected autoimmune process that affects or weakens the blood/brain barrier. The region of the brain primarily affected is basal ganglia which is responsible for the following functions: movement, cognitive perception, habit, executive, ‘logic based’ thinking, emotions and the endocrine system.”

It is useful to put that helpful definition on the record.

I have been in correspondence with the Department on behalf of my constituents on this matter for a while. I had a helpful letter from the Minister on 16 May, for which I am grateful. I was pleased that, in that letter, she informed me that the World Health Organisation had recently added PANS and PANDAS as a discrete disease entity to its international classification of diseases in its 11th revision, ICD-11. The Minister went on to say that the NHS would need NICE to step forward with recommendations and a proper research base. I was therefore disappointed to read in a follow-up letter from NHS England on 26 June that:

“There is currently no specific prescribed service for this condition”,

even though it is an internationally recognised disease. The letter continued:

“It is not NHS England’s role to develop clinical guidance”.

The letter stated that that rested with NICE.

The helpful House of Commons briefing on the debate draws our attention to the fact that a lot international work has been done on this issue. In 2013, there was a PANS consensus conference at Stanford, one of America’s leading universities. There were therefore the beginnings of an international clinical consensus a decade ago. More recently, in April 2021, guidance was issued for the Nordic countries. The link is available in the House of Commons briefing pack. I have read the guidance in advance of the debate, and it covers Sweden, Denmark and Norway, though I note that there was UK research input into the study. It is clear about the definition and the recommended courses of treatment.

I commend PANS PANDAS UK, as all colleagues have done, for the two excellent information leaflets. One is titled “GP Information Leaflet”. After the debate I will be sending physical copies of that very good leaflet to all nine GP surgeries in my constituency. Doctors are very busy people, and they may have done their training a while ago, when this condition was not taught in medical school. They cannot know everything. Sending out that leaflet will be my small effort to ensure that GPs in my constituency have the best information.

I am grateful to Dr Andrew Curran, consultant paediatric neurologist, who is quoted in the leaflet saying:

“By the time parents get to me, they have usually diagnosed their children already and they are usually right!”

There is much helpful information in the leaflet, but I think this is its most important advice:

“Initiate treatment immediately—do not wait for test results”.

From what I understand, that would be provision of the relevant antibiotics.

As the hon. Member for North East Fife said, we must also be aware of the impact of PANS/PANDAS on the whole family. Another PANS PANDAS UK leaflet gives very good tips on how to support a child with the condition. It makes the point that these children are ill, not naughty. Is that not a terrible thought—that they might have been treated as naughty when they are actually ill? There is also information about supporting the parents, who will be under huge strain, and the siblings of children with PANS and PANDAS—we must remember them. It is a really practical, helpful leaflet. It makes the point that these families may have to cancel plans at very short notice and that their friends and family need to understand that, be supportive and make allowances.

I want to finish by reading out a short email that I received yesterday from parents in my constituency who have a child with PANS/PANDAS, because I think they put it really well. I will change the child’s name, but the email reads as follows:

“Sophie is currently in a PANDAS flare, she managed to get 2 hours of sleep last night, her anxiety was overwhelming and she broke out in hives, subsequently missing a day of school. The issue is, there is no one to turn to unless the private route is taken which costs thousands of pounds. Even then the NHS and schools are, the majority of times, not willing to accept the diagnosis as it’s been sought privately.”

Obviously, many people cannot remotely afford private treatment. The email continues:

“CAMHS…have discharged Sophie, there is just no support for these poor children and families suffering with PANS PANDAS.”

Sophie’s parents express hope that this debate

“will start the ball rolling to get the support we so desperately need in regards to a NHS treatment pathway and support in schools so that PANS PANDAS are recognised in their own rights as an illness which has a severe detrimental effect on children with the condition, not only on their mental health but also on their physical health.”

That is so well-written and powerful and makes the point extremely well. I hope the Minister has listened and will respond appropriately.