PANS and PANDAS

Wendy Chamberlain Excerpts

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.

[Martin Docherty-Hughes (West Dunbartonshire) (SNP)]

I am grateful to the hon. Member for securing the debate. I wonder whether they agree that clinical evidence and lived experience across the whole of the UK must inform the evidence base that clinicians and NICE make, and that that must be based on the reality experienced by our constituents who are suffering from PANS/PANDAS. Through this debate, I hope the hon. Member will be able to force that through not just to Ministers, but to the civil servants who are advising them and the clinicians who say that this condition does not exist.

[Wendy Chamberlain]

I am conscious that we need to deal with the medical profession in relation to this condition, but we must be able to do things as parliamentarians, and the Government must be able to do things too. Obviously, I am standing here as a Scottish MP, as is the hon. Member. It is about ensuring that there is parity of treatment across the UK.

As I say, I hope it will not be a difficult ask for the Minister to say that PANS/PANDAS is real, because I am privileged to have sight of a letter that she sent earlier this year to another Member, which confirmed such a position. In that letter she noted the common practice of treating infections with antibiotics and that PANS/PANDAS could be treated successfully in that way if caught early enough. I am sure she will also be aware of the PANS/PANDAS working group statement that was issued earlier this year.

The working group consisted of representatives from the British Paediatric Neurology Association, the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing, the Royal College of Occupational Therapists, and the British Paediatric Allergy, Immunity and Infection Group, as well as parents, social workers and campaigners. The statement is an important step. It signposts clinicians to the international peer-reviewed treatment guidance in the absence of peer-reviewed treatment guidance domestically. The position appears to be the same as the Minister set out in her letter. I therefore ask her to use her time today to confirm that to the House and pledge to make a written statement to the same effect. The power of such a statement in the face of doctors refusing to believe in your child’s illness would be literally life changing and potentially life saving. As I have said, as a Scottish MP I would want to see parity of support in Scotland. I hope that when the SNP spokesperson, the hon. Member for Motherwell and Wishaw (Marion Fellows), speaks in the debate she will agree to take forward a request from me to the Cabinet Secretary for health to ensure that we see that parity of care in Scotland.

[Julian Smith (Skipton and Ripon) (Con)]

I commend the hon. Member on the preparation that went into this debate and the information that she sent round to colleagues. One issue that seems to be present in the condition is the crossover with autism spectrum disorder, attention deficit hyperactivity disorder, and pathological demand avoidance and other types of autism. It would be useful to hear more from her about how the symptoms can sometimes be confused.

[Wendy Chamberlain]

I accept that the presentation of the symptoms can and does give clinicians pause for thought. The very severe onset of symptoms is clearly very different from other mental health conditions that develop over a period of time. As I say, when a patient presents with those symptoms to a GP there is an opportunity to take the antibiotic step that would allow PANS/PANDAS to be ruled out at an early stage, if that is not the condition that they have. Today’s debate is aimed at raising awareness so that we can separate out the different conditions. I am grateful to the right hon. Member for Skipton and Ripon (Julian Smith) for taking part in the debate.

I hope the Minister will be able to take such vital steps today. Looking to the future, I think we all want to see NHS and NICE guidance and proper research into the conditions and their treatment. I am sure the Minister and her officials have regular meetings with representatives from the NHS, the Academy of Medical Royal Colleges and the National Institute for Health and Care Research. Can she ensure that PANS is discussed in those places, that awareness is raised and that there is home-grown leadership? Medical conditions do not have nationalities and, with political will, there is no reason why the UK cannot be a world leader in treating this one.

I want to look at aspects of dealing with a health condition that do not just stem from medical diagnosis and treatment. I hope the Minister regularly speaks to colleagues from other Departments where their remits cross. There is a remit for the Department of Health and Social Care in building the hospitals, but it is the Department for Transport that makes sure there are roads to get people to them. It is the Minister’s Department that comes up with a cancer strategy, but the Department for Work and Pensions sets the policy on statutory sick pay and disability benefits. In this case, although she has an incredibly important role in ensuring the recognition and treatment of PANS/PANDAS, we need to look at the other impacts on a child who is so poorly.

The first and most obvious point is that a child who is too poorly to get dressed is probably unlikely to be in school. If they are in school, flare-ups of the condition—one of the symptoms is difficulties with cognitive processing—can mean dropping behind. When I recently asked children on the youth board about that, I was told that universally before they were ill they had loved school and had been doing well there. In fact, a survey carried out by PANS PANDAS UK this year found that, pre-onset, only 9% of patients were below the expected academic standard for their age group. After onset, the figure soared to 53%.

As with treatment, support from the school is a lottery for families. Most schools and teachers do not know what PANS/PANDAS is and have no idea how to support students with it. I have spoken to families of children who have been out of education for over a year because they have been too ill to go to school. I have spoken to others who say that the support is so poor that they have moved to home schooling. Others count themselves as lucky, because the special educational needs department has been open to supporting them.

One girl on the youth board told me that the SEN department at school was her safe place, that it was really calm, and that her teachers had researched the condition and made allowances for her school work. That should not be the exception in children’s experience—it should be what we aspire to for all of them. Not being in school is a reality for many children with PANS/PANDAS, particularly if they are not receiving the proper medical support to help them get better.

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

The hon. Lady is making a powerful speech. Given that we do not know how many children are undiagnosed, is it possible that many of them could be in hugely expensive specialist education for children with autism or ADHD with high student-staff ratios that is wholly inappropriate for them and would not be needed if they had been diagnosed and treated?

[Wendy Chamberlain]

It comes back all the time to this root issue: recognition and treatment of this condition mean that outcomes on every level are much better, not only for the individual children and their families, but from a wider societal perspective. When I asked the youth board what it thinks needs to change to help other children with PANS, one of the main responses was more support and information for schools. I know that that is not the Minister’s portfolio, but given the overlap I trust that she will be able to raise that with her colleagues.

Childhood and adolescence are important times in someone’s development, not just educationally but socially. Childhood and teenage friendships are a vital part of how we mature and learn to navigate the world, and never more so than when facing a terrifying illness. It was difficult to hear children on the youth board talk about losing their friendships because as adults there is so little we can do, but I felt that it was important to ask the question because it is fundamental to children growing up. One child told me that they lost most of their friends when they transitioned to secondary school and how hard it was to make new friends when people only see how they act when their illness is in control. Another talked of how they lost all their friends seemingly overnight—they simply became a taboo subject that other children and their families did not talk about.

There were other more positive stories. One mum told me how her daughter’s friends would come and sit outside her bedroom door to try to convince her to come out and that when her daughter finally got the right treatment, her friends were some of the first people there, literally running up to their house to see her. They told her that they felt they had her back, and within a week they were out having fun together. As a parent, I am the first to acknowledge that there is nothing we can do to make children be friends with each other, but when we talk about appropriate treatment and support in school, it is these friendships that are also at stake.

I want to focus on the children and young people who suffer so much with PANS/PANDAS, but of course we need to think about their families too. Putting aside the strains and stresses experienced by a parent who witnesses their child being so ill, caring for them and having to fight battle after battle for treatment, they might face the choice of accepting a prescription for anti-psychotic medication for their 9-year-old child or social workers deciding to remove that child from their care.

Financially, this illness has a huge impact, whether through parents stopping work to care for their child or through seeking private treatment. The PANS PANDAS UK 2020 parents survey found that less than 20% of parents had experienced little or no financial impact. Almost a quarter estimated a financial impact of over £10,000, while over 8% estimated that it was over £100,000. An additional quarter simply said, “substantial” without putting a figure on it. Considering that a substantial financial impact is relative, that might be enough to put a family on the poverty line, whether the actual figure is £1,000 or £100,000. What about those children where private medication or support is simply not an option? The reality is that, at the moment, money matters for someone with a child who has PANS/PANDAS. Without NHS guidance and diagnosis and with so many families relying on private healthcare, we have absolutely no way of knowing how many children are going undiagnosed, as the hon. Member for Brentford and Isleworth (Ruth Cadbury) referenced.

What we do know is we are seeing a crisis in mental health conditions among our young people. Anxiety is skyrocketing, as are compulsive behaviours and tics. We cannot rule out the likelihood that the PANS/PANDAS cases that we know about are just the tip of the iceberg. We need urgent research, treatment and diagnosis to be universally available so that it does not matter where a child lives or what their family means are; their chances for support are the same.

I pay tribute to the support that PANS PANDAS UK and the wider community have given me, but also to families and children around the country. I would like to end by returning to the reflections of some of the children I met; they are so brave. They talked about how confusing and scary it was to suddenly have voices in their head. They talked about the panic of suddenly having to touch the same item in their bedroom over and over again—of not knowing what was happening, of sharing that with anyone in their family, or of having a brain that could not focus. This is their message to adults in Government, and to all of us here today: what is happening to them is not a choice. They care about school, their friends and their lives. They are not naughty children. If after this debate even just one more person understands that, that would help. This is not just a healthcare problem; it is a political problem, a societal problem, and one that increasingly needs urgent attention.

[Several hon. Members rose—]

--- Later in debate ---

[Wendy Chamberlain]

I echo the thanks given to all Members who have taken the time to attend. I do not want to suggest that the shadow Minister, the SNP spokesperson and the Minister did not want to attend, but it is striking that Back-Bench Members, including some who may not have been aware of the condition until recently, wanted to be here because, having been contacted by constituents, they now have a particular interest in the issue.

The hon. Member for Aberconwy (Robin Millar), who chairs the APPG—the hon. Member for Brentford and Isleworth (Ruth Cadbury) was the previous chair—talked strongly about how symptoms are misinterpreted, which results in misdiagnosis or lack of diagnosis. MPs found out about this due to constituents getting in touch because of the stigma. I have engaged with my constituent and we have spoken about potentially speaking to the local newspaper. Indeed, we had an approach from a local television news broadcaster who said that they would be desperate to speak to the family. However, the stigma of this condition and the need to protect the child, who is not getting the support they need from medical professionals, are so strong that they feel that they cannot speak out publicly. I am therefore very grateful to the Backbench Business Committee that we have had the opportunity to do that.

The Minister’s response has been encouraging. If there is anything that I as a Scottish MP can do in relation to the Scottish Government, I am keen to help. We have ICD-11 from the WHO, and now we need to move forward as quickly as possible to build that evidence so as to give us everything we need, including the NICE guidance.

I intend to do the same as the hon. Member for South West Bedfordshire (Andrew Selous). When the Minister writes to NHS England, I hope she will repeat her quote, which is in Hansard, that the Government recognise this condition. One of the challenges, certainly from the perspective of first-line practitioners, is that while people might get the support they need from their regular GP, another GP at the surgery might provide a completely different response. We should not need NICE guidance to address such inconsistency and lack of support—we should seek to address that now. I thank everyone again for their time.

Question put and agreed to.

Resolved,

That this House has considered PANS and PANDAS.