PANS and PANDAS

Debate between Wendy Chamberlain and Gerald Jones

Tuesday 12th September 2023 Westminster Hall

[Wendy Chamberlain (North East Fife) (LD)]

I beg to move,

That this House has considered PANS and PANDAS.

It is a pleasure to serve under your chairpersonship, Mr Dowd. I will refer to paediatric acute-onset neuro- psychiatric syndrome—PANS—and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections—PANDAS—as PANS/PANDAS throughout. Before I begin my speech, I welcome members of the all-party parliamentary group on PANS and PANDAS who are here and those Members who supported the Backbench Business debate application that brought us here. Most importantly, I welcome representatives from PANS PANDAS UK and medical specialists who are here to watch the debate; they will be available to meet MPs in room W3 afterwards.

I acknowledge that there may well be a significant variation in knowledge of the conditions PANS/PANDAS in the room. On the one hand, we are joined by experts and many MPs, including me, who know a little or something about the condition through our casework and campaigning, but I would not be surprised, Mr Dowd, if you did not know what we are here to discuss. The reason that that would not surprise me is because it is also the reason that we are here today: despite becoming increasingly widespread among children and young people, there is little awareness of or treatment for PANS/PANDAS. I hope that colleagues will bear with me if I briefly set out what PANS/PANDAS are.

[Gerald Jones (Merthyr Tydfil and Rhymney) (Lab)]

I congratulate the hon. Lady on securing this debate. She mentioned that awareness is crucial. A family in my constituency of Merthyr Tydfil and Rhymney has been living through what has been described as a living hell—it is a really heartbreaking story—since their daughter first had symptoms back in January. Awareness is low across the country, including in the medical profession in, and the APPG will undoubtedly help with that. I am sure that we are all rallying to raise awareness and support and get awareness out there across the country.

[Wendy Chamberlain]

A “living hell” is certainly how it has been described to me in conversations that I have had, not only because of the symptoms themselves and dealing with them, but because of the lack of support compounding that distress.

I will outline what PANS/PANDAS are. PANS is a condition in children and young people that can result from an initial mild infection such as chickenpox or covid. PANDAS is a specific sort of PANS that stems from strep. While the initial infection might be mild, in some cases it triggers a misdirected immune response and/or a brain inflammation that causes the rapid onset of severe symptoms, which can include obsessive compulsive disorder, tics, severely restricted food intake, anxiety, aggression, depression, memory deficiency, poor cognitive function and behavioural and developmental regression. These changes can and do take place literally overnight. Understandably, the impact of those symptoms on a child and their family is monumental. We do not need to be parents ourselves, although many of us here may be, to understand how utterly distressing it must be to have a formerly healthy, happy child suddenly find themselves unable to leave their bedroom, dress, eat, wash, talk to others or attend school and to see them vanish as the illness takes over. Sadly, that distress is compounded and worsened many times over by the lack of available support for patients and their families, as PANS is often not even suggested, considered or acknowledged.

Globally, PANS/PANDAS are recognised and treatment pathways have been set up. The World Health Organisation has explicitly acknowledged the conditions in its latest guidance. However, as things stand, there is neither NHS nor National Institute for Health and Care Excellence guidance on the diagnosis or treatment of PANS/PANDAS in any part of the UK. That leaves patients subject to an unfair and arbitrary lottery. All the evidence suggests that the best treatment is early diagnosis and a two-week course of antibiotics. If that window is missed, antibiotics may become less effective and other treatments are needed.

However, in the UK, without those pathways the vast majority of children are given inappropriate and ineffective treatment for their symptoms, rather than for the underlying cause. That often involves long waits for mental health treatments from child and adolescent mental health services, which I think we all know and recognise are overburdened. In a survey carried out in 2020 for PANS PANDAS UK, 95% of parents said that their GP had not suggested PANS/PANDAS as a diagnosis. Often, they can suggest no diagnosis at all; families must then research and fight for treatment themselves. The reality is that, after months of seeing their child suffer without any explanation, families end up turning to private healthcare, but that it only an option for a few. It is only at that point that a diagnosis is forthcoming.

I suspect that I am like most MPs, in that I became aware of PANS because a constituent approached me for support with her local NHS doctor. In the run-up to this debate, I had the privilege of speaking to some of the children and young people who sit on the PANS PANDAS UK youth advisory board, who shared their experiences with me. Their experiences of being diagnosed are all different, with only one exception: they were all negative. If any of them are watching today, I want to thank them for being able to talk to me about their experiences. It was really important to hear directly from them, and I thank them very much for that.

One of the children on the board talked about the fact that the doctors really did nothing for her. Every time she went to the hospital, she was made to feel like a mystery. Because the doctors did not understand what was wrong with her, it felt as if they were just going to leave it and give up. Another child told us about being sent from place to place, with no medical department taking responsibility. She went through waiting list and waiting list, with no resolution, as the symptoms continued and worsened.

It is really important to remember that the initial recommendation on diagnosis is for two weeks of antibiotics. As a parent, I find it quite difficult to understand why that is not being pursued by GPs, because it treats the initial infection if it is PANS/PANDAS. It would prevent the symptoms from deteriorating further, which might lead to someone needing more mental health support. Frankly, if it is not PANS, the antibiotics will not work and we will be able to rule that out pretty quickly.

Almost all the children I spoke to had received private treatment and given up on the NHS, but private diagnosis and treatment plans are often rejected by local GPs and health boards. One child remembers a doctor saying that he would refuse to treat an American illness. Another was refused ongoing treatment because the consultant did not believe that PANS was real. Many children have their medications stopped when their parents move back to NHS care; indeed, this is something I am supporting one of my constituents with now, with NHS Fife newly refusing to provide prescriptions for privately recommended medication. That is despite the fact that my constituent’s child has had both an NHS and private diagnosis. Imagine being a child and going through the trauma of this change in your life and condition—it is terrifying—then being told by the adults treating you that they do not believe that what you are experiencing is real or exists.

There is a lack of direction from the top. I have asked before about the implementation of the World Health Organisation guidelines that will formally acknowledge PANS/PANDAS and its treatments within our domestic health systems, and I have been told it will take some time. In the meantime, children are suffering needlessly, as are their families. We have to consider the wider impact on the siblings of children experiencing this condition.

I understand that the Minister might not want to pre-empt the independent medical process relating to the NICE guidelines, but if she would confirm her position that PANS/PANDAS is as real as having a broken leg or the flu, I really believe that that would be a significant step. I hope that that will not be a difficult ask.