PANS and PANDAS — [Peter Dowd in the Chair]

– in Westminster Hall at 9:30 am on 12 September 2023.

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Photo of Wendy Chamberlain Wendy Chamberlain Liberal Democrat Chief Whip, Liberal Democrat Spokesperson (Work and Pensions) 9:30, 12 September 2023

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.

Photo of Gerald Jones Gerald Jones Shadow Minister (Wales), Opposition Whip (Commons), Shadow Minister (Scotland)

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.

Photo of Wendy Chamberlain Wendy Chamberlain Liberal Democrat Chief Whip, Liberal Democrat Spokesperson (Work and Pensions)

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.

Photo of Martin Docherty Martin Docherty Shadow SNP Spokesperson (Defence)

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.

Photo of Wendy Chamberlain Wendy Chamberlain Liberal Democrat Chief Whip, Liberal Democrat Spokesperson (Work and Pensions)

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, 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.

Photo of Julian Smith Julian Smith Conservative, Skipton and Ripon

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.

Photo of Wendy Chamberlain Wendy Chamberlain Liberal Democrat Chief Whip, Liberal Democrat Spokesperson (Work and Pensions)

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 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.

Photo of Ruth Cadbury Ruth Cadbury Shadow Minister (International Trade), Shadow Minister (Justice)

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?

Photo of Wendy Chamberlain Wendy Chamberlain Liberal Democrat Chief Whip, Liberal Democrat Spokesperson (Work and Pensions)

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 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—

Photo of Peter Dowd Peter Dowd Labour, Bootle

I was going to remind hon. Members to bob if they wanted to speak, but you have all bobbed, so thank you. I want to bring the Front Benchers in from 10.28 am.

Photo of Selaine Saxby Selaine Saxby Conservative, North Devon 9:50, 12 September 2023

It is a pleasure to serve under your chairmanship, Mr Dowd. I thank Wendy Chamberlain for bringing this important debate to the House.

As already detailed, PANS and PANDAS can change a family’s life overnight. That is exactly what happened to my constituent Neil Gilson and his family. His son Jack was 18 months old when he caught tonsilitis, and an otherwise innocuous childhood illness turned their life upside down. Jack went from being a normal and happy little boy to one who was aggressive and anxious. He struggled playing with his friends, would go days without wanting to leave the house, and would not speak a word for long periods of time. His illness was not limited to his mental health but affected his physical health, too; he lost his fingernails and toenails and had very little energy. Neil describes it as,

“it was like there was no-one there” some days—far from normal behaviour for a young boy.

For years, Neil and his wife sought a diagnosis. Various behaviours were put down to Tourette’s syndrome, an allergy or even just normal behaviour for his age, but one morning, Neil heard a news story about PANS and PANDAS that matched Jack completely. His doctor had never heard of the condition, but after an appointment with a specialist and a course of antibiotics, they had their son back in just two weeks. That is what makes PANS and PANDAS so shocking. It is an inflammation of the brain that can be quickly and effectively treated with a course of antibiotics, but it is so little known that it is impossible to say how many parents’ concerns are being put down to other causes simply because their GP has never heard of PANS and PANDAS. Will the Minister bring in training and guidance, so that obtaining a diagnosis is no longer a matter of chance, and work to raise awareness among healthcare professionals and those involved in childcare, so that families do not have to go through years of anxiety and all the problems that come with an unwell child.

I pay tribute to Neil’s fantastic work in raising both awareness and money for PANS and PANDAS. Since 2019, he has swum marathon distances in Loch Lubnaig and in 2021 became the first person to swim across the Bristol channel from Swansea to Ilfracombe. He attempted to swim the 70 km length of Lake Geneva this summer; he was 56 km in when he developed hypothermia and had to be pulled out by his team, but he has vowed to try again next year. Regardless of the distance, Neil has raised a fantastic amount of money and awareness and will change the lives of many children like his son Jack.

I hope that us coming together today and highlighting the cases in our constituencies will in itself help to raise awareness, so that early access to those antibiotics is more widely available to children who may have PANS and PANDAS.

Photo of Ruth Cadbury Ruth Cadbury Shadow Minister (International Trade), Shadow Minister (Justice) 9:53, 12 September 2023

It is an honour to serve in this debate under your chairship, Mr Dowd. I thank Wendy Chamberlain for securing this important debate and the Backbench Business Committee for finding time in the parliamentary timetable.

I also pay tribute to PANS PANDAS UK. The charity has been working tirelessly to raise awareness, provide support to parents and push for change. They are not professional politicians or lobbyists, but simply parents who are fighting for a change, and I thank them for all their work.

As the former co-chair of the APPG on PANS and PANDAS, I am glad that the condition will now find itself inked into the pages of Hansard. Too many young people and children across the UK are suffering from this awful, life-altering condition and are not getting the support that they deserve. In many cases, had that support been available when they first exhibit changed behaviours, it would have drastically improved their recovery—for some, almost immediately.

Like many in the Chamber today, I am here because about seven years ago a couple in my constituency contacted me about their child; a previously outgoing, bright, happy and lively child suddenly had a switch flipped and became ridden with anxiety, was unwilling to leave the house, and suffered from extreme OCD. More recently, another constituent had an experience similar to that described by Selaine Saxby: the doctors did not know what it was. At our first APPG meeting, we saw video evidence from parents about the sudden changes: tics, eating disorders, extreme anxiety, and violent or introverted behaviour. As a parent I found that harrowing to watch, and I can only imagine the anguish and difficulty it must cause for families up and down the country.

For many, there is then a struggle to get treatment as they face the brick wall that is too often formed in the NHS, the near impossibility of getting speedy and helpful treatment, GPs who are not aware of the condition, and a chronic lack of awareness even in specialist units. Professional demarcation lines mean that too often the psychiatrist and neurological specialist will not realise that the cause is a strep infection or similar, which can be sorted fairly quickly. All that is coupled with a scepticism of some, who do not believe or accept that it is a condition. Remember when that happened with myalgic encephalomyelitis? We know of children with the symptoms of PANS/PANDAS who have gone through years of agony and been told to go to therapy. If they finally get lucky and win the lottery for treatment, they are often prescribed amoxicillin—a common antibiotic, which we gave our kids every time they had an ear or throat infection. It makes a huge difference, often almost immediately—within a week or two. Sadly, when those who have had PANS or PANDAS for months or years are finally diagnosed, they often need more complex and thus more expensive treatment, and it is a long haul to recovery.

My hon. Friend Kim Leadbeater, who is unable to be here today, asked me to share the experience of a constituent whose child had PANS. Once the support and help was in place, the child started to recover; they are now thriving, and are starting college this month. With the right treatment and support, children can thrive and succeed, but getting the diagnosis is key.

I welcome the working group that has been set up by stakeholders, including PANS PANDAS UK and various royal colleges. It recommends that all NHS trusts develop comprehensive cross-speciality and multidisciplinary team provision to review and treat children with acute-onset neuropsychiatric symptoms and that children should receive a full medical evaluation. As we have heard, the quick test for whether a child has PANS/PANDAS or something else is to start a course of amoxicillin or a similar antibiotic. If symptoms improve, they have PANS/PANDAS; if they do not, that is the point to move on to more complex diagnostics and treatment to try to work out what the cause is. I hope that change will result from that recommendation.

As we have heard, families are too often forced to get private treatment—spending a small fortune for something they should have been able to get on the NHS. Of course, many of our constituents do not have the money for private treatment, and too many cases—we do not know how many—remain undiagnosed. The formation of the working group shows that we have made some progress since 2019 and 2020, when we first raised the issue in Parliament. In the meantime, more children and families are being affected, and more lives are being ruined and turned upside down because PANS/PANDAS is not being treated quickly and properly.

I look forward to hearing from the Minister and hope that she can tell us what her Department is doing with regard to the working group’s recommendations. I very much hope that she and her officials do not put it into what the former Member for Norwich South called the “too difficult box”.

Photo of Robin Millar Robin Millar Conservative, Aberconwy 9:58, 12 September 2023

It is a pleasure to serve under you today, Mr Dowd. I congratulate my colleague on the APPG, Wendy Chamberlain, on securing the debate and on giving such a comprehensive account in her opening remarks. I also acknowledge the work that Ruth Cadbury has done on the matter here in the House.

As the chairman of the APPG on PANS and PANDAS, I also extend my gratitude to the organisation PANS PANDAS UK. I have had the privilege of working closely with Vicky and the team, and have seen at first hand their tireless efforts as the only charity in the UK that supports children and families living with the conditions. Their advocacy and community support work continue to prove invaluable for patients, carers and healthcare professionals alike.

Like most of us here in Westminster Hall this morning, I was first made aware of PANS PANDAS UK when a constituent contacted me to discuss their case. Separately and much later, a dear family friend contacted me to say that her daughter had also been affected. I recognise many of the descriptions given by the hon. Member for North East Fife of the circumstances that they had to deal with at home. In my speech today I will set out three key issues that have become apparent to parents and interested professionals over the years: first, the misinterpretation of symptoms; secondly, the subsequent misdiagnoses; and, thirdly, the significant problems that such misdiagnoses cause for children with these conditions.

First, according to a survey by PANS PANDAS UK, 95% of GPs do not know about these conditions, and 19% of affected parents said that their paediatrician was aware of these conditions but considered it too controversial to diagnose a child with any of them. As a result, many children with PANS and PANDAS receive multiple diagnoses, often of more widely recognised conditions with overlapping symptom profiles, including anxiety disorders, sensory processing disorders, ADHD and Tourette’s syndrome; some 31% of children with PANS or PANDAS are diagnosed with autistic spectrum disorder. That shows a clear lack of appropriate training for health professionals and means that the wide-ranging symptoms of these conditions are not being recognised as potentially linked to one of these conditions.

Secondly, continued misdiagnoses cause significant delays in the identification of PANS and PANDAS and the provision of effective treatment. Currently, there is no specific test that will prove or disprove the existence of the conditions, so a diagnosis must be made on the basis of an analysis of the patient’s medical history, a review of their current symptoms and a physical examination. Laboratory work and additional testing can be ordered to identify an infectious trigger, rule out other diagnoses and inform treatment plans, but all of that relies upon a clinician’s basic awareness of these conditions.

PANDAS is listed in the international classification of diseases by the World Health Organisation, and two sets of international peer-reviewed treatment guidelines exist. In fact, it is international clinicians currently working in this field who emphasise the importance of early diagnosis of PANS and PANDAS to reduce the risk of patients developing disabling chronic neurological conditions. Understanding the symptoms and detecting them early is crucial to patient outcomes.

Thirdly, we cannot underestimate the strain that these conditions place on parents, families and the children affected. Many families across the UK struggle to access any healthcare provision at all for these conditions on the NHS. In the same PANS PANDAS UK survey of parents that I referred to earlier, 47% of respondents said they had not received any treatment from the NHS and 37% said that, as a result, they have had to seek private healthcare Too often, access to adequate health provision for families depends upon a parent’s ability to carry out research and advocate for their child, and then fund private assessment and treatment.

As we have heard, the misdiagnosis and misinterpretation of symptoms has led to children being sectioned or admitted to psychiatric hospitals, and subjected to treatments that are ineffective, inappropriate or harmful. Families who have been rejected for referrals, or bounced between doctors and psychiatrists who are reluctant to consider a PANS PANDAS diagnosis or who are unaware of the conditions, must either watch their children deteriorate or somehow scrape together enough money to consult someone who has appropriate experience in the field. Private and overseas treatment must not be the only viable option for appropriate care in a nation that rightly prides itself on having an inclusive and accessible health service.

It is evident that significant change is needed in the UK to ensure that children receive timely and accurate diagnosis and the appropriate treatment and support that they need. We know that the underlying cause of PANS and PANDAS is suspected to be an abnormal immune and inflammatory response to infection, so my first request is that research into post-infectious disorders is given adequate funding and is accelerated across the UK. That is necessary if we are to see an improvement in the training and guidelines given to clinicians regarding these conditions.

Secondly, as the PANS PANDAS working group, we are pressing for the swift development of a UK-wide consensus on the treatment of children presenting with acute-onset neuropsychiatric symptoms. As I have already highlighted, without appropriate training and guidelines, UK clinicians are currently ill-equipped, so thirdly, we need to prioritise the development of clinical pathways to ensure that children and families do not continue to suffer as so many have suffered already.

I thank the UK Health Minister who is here today, the Under-Secretary of State for Health and Social Care, Maria Caulfield, for her interest and I invite her to meet members of the APPG, PANS PANDAS UK and representatives of parents to hear their experiences first hand. Listening to the experience of patients is the first step in ensuring both that they receive the support they deserve and that we can secure the changes that are needed.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 10:04, 12 September 2023

It is indeed a pleasure to speak in this debate.

First of all, I thank Wendy Chamberlain for securing this very important debate and for, as always, setting the scene so well. She and I may be from different political parties, but when we clearly agree on social issues, I am more than pleased to come here and support her. I added my name, as did others, to early-day motion 948, submitted by the hon. Lady to highlight the issue of PANS and PANDAS. It is a reminder that the census estimated that between one in 200 children in the United Kingdom of Great Britain and Northern Ireland are subject to this condition. The numbers are not minuscule; it resonates across the whole UK.

PANS and PANDAS are two related paediatric disorders that can have a profound impact on a child’s life. Those who have spoken before have outlined examples and interventions to illustrate the case being made so well. There is currently no uniform recognition or treatment for the condition, as the hon. Lady set out in her introduction. Although the World Health Organisation guidance recognises the condition and recommends treatment with antibiotics, that has yet to be adopted by the NHS. The Minister knows I have a fondness for her as a Minister. I know she does well and that her instinct is to respond well and to answer the questions that we ask. I look forward to hearing her response.

The NHS not recognising these conditions leaves families devastated as they struggle for treatment. Some families have said that they have been referred to CAMHS as an alternative to NHS treatment. That is not always the most appropriate treatment, by the way, but at least there is some response. Others have outlined the symptoms that PANS and PANDAS can include. We probably have all recognised them in our constituency cases, whether it be OCD, tics, restricted food intake, development regression, anxiety, depression, irritability—even hallucinations and delusions. Those are so great that they cannot be ignored.

The hon. Member for North East Fife sent us some information at our request, which we appreciate. That illustrates the issue the hon. Lady wants to put forward, so we can support her from a constituent’s point of view. When I read what the hon. Lady’s constituent, who is suspected to have PANS and PANDAS, had said, there was a real disconnect given that health is devolved.

The hon. Member for North East Fife referred to the comments of Marion Fellows, which I know, without even hearing those words, will also support the points of view that we are putting forward today. The devolved nations must now fight harder for an approach.

Photo of Martin Docherty Martin Docherty Shadow SNP Spokesperson (Defence)

Briefly on the devolved nations, does the hon. Gentleman recognise that we need to work with our colleagues in the Scottish Parliament, MSPs, with Members of the Senedd of Wales and, if it deigns to sit, Stormont, where MLAs need to reform themselves to make appropriate health policy for devolved nations.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)

I absolutely do think that. I thank the hon. Gentleman for that intervention. At the end of my contribution, I was going to ask for that very thing. The hon. Gentleman has reminded me and the House of the importance of all the devolved nations working together, in tandem and alongside the Minister here at Westminster.

The symptoms of PANS and PANDAS can make education and school life difficult for children and young people. I know education is not the Minister’s responsibility, but I believe there is a need for the two Departments to work in tandem. Schools have a duty to support children and young people with medical needs, and that wee bit of extra support must be there for our young people. PANS PANDAS UK has been providing free and online CPD-accredited training for a wide range of professionals, including educational psychologists, specialists and support teachers. That is indeed a much welcomed step.

Will the Minister reaffirm what the hon. Member for West Dunbartonshire said in his intervention: ensure that at Westminster the evidential and factual base and the information that the Minister has in her Department is shared with the devolved Administrations? I believe that sometimes here at Westminster, the Government should drive the policy for the devolved nations. I know that matters are evolving and that responsibility lies with the devolved nations, but the Government will not find us wanting. They will not find the Scottish Parliament, the Welsh Parliament or the Northern Ireland Assembly wanting when it comes to working collectively to make life better for our constituents.

We are discussing a devastating condition, which impacts children and their families. The NHS must do more to support parents in learning how to cope with it, and research must be better funded to assist with diagnosing the condition. There is much more to do to support those with the disease.

I thank the hon. Member for North East Fife for raising the matter today, and every right hon. and hon. Member who has contributed through speeches and interventions, and those who will contribute shortly. I look forward to the shadow Ministers’ contributions and particularly to that of the Minister. I say to her that the eyes of all of us will be upon her as the Minister, and upon the Government, looking for the response that we hope to receive.

Photo of Andrew Selous Andrew Selous The Second Church Estates Commissioner, The Second Church Estates Commissioner 10:10, 12 September 2023

It is a pleasure to serve under your chairmanship, Mr Dowd. I am grateful to 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.

Photo of Ian Lavery Ian Lavery Labour, Wansbeck 10:18, 12 September 2023

Thank you for allowing me to contribute to the debate, Mr Dowd. I apologise for being late; I was in an important Delegated Legislation Committee, but I am extremely pleased that the debate is happening and I thought that it was important to try to get here to hear everything that has been said.

I thank Wendy Chamberlain for securing this debate to raise awareness of PANS/PANDAS, which sadly continues to be a poorly understood and widely ignored condition. Public awareness of this extremely serious condition remains incredibly low, despite the best efforts of campaigners, who I think we all agree do a brilliant job. Parents and children have to deal with the often severe symptoms of PANS/PANDAS, which are wide-ranging—that is clear from what has been said today—and can cause immense disruption that is difficult to live with. They also face barriers across our health system to get the support they need, as a result of the condition not being fully recognised, or perhaps not being taken as seriously as it needs to be.

I freely admit that I was not aware of the condition until relatively recently, when a constituent approached my office in relation to a child suffering from what she believed to be PANS/PANDAS. The child had been a happy, healthy, normal toddler but, following a bout of chicken pox at a young age, began displaying a number of unusual and alarming symptoms, almost out of nowhere. The symptoms persisted for the next seven years, curiously flaring up with each new infection. Symptoms include high levels of anxiety, aggression, reversion of speech and language, issues around food, obsessive behaviours, and losing the ability to write, among many other things.

Things came to head during the pandemic, when the child contracted covid alongside an infection in his nose. During the nine months that the infection persisted, the child could barely perform the most basic functions. They would get extremely upset and be troubled by persistent anxiety, or become aggressive, angry and destructive. They lost the ability to write, could hardly speak and struggled to eat. That resulted in a sustained period out of school and, as I am sure everyone here can imagine, immense strain and stress on the child and the rest of the family, as they struggled to control the symptoms and feared what could be causing such erratic and disruptive behaviour.

After nine months, the child finally underwent a procedure to remove the infection from his nose, followed by a course of antibiotics. Remarkably, within a week, he was back in school, reading, writing, socialising with classmates and showing every sign of once again being a happy, healthy child.

It is clear from that experience that PANS/PANDAS, or indeed any kind of infection inducing neuroimmune disorder, would be a strong candidate for diagnosis, yet the family have struggled to get the disorder recognised by clinicians and the NHS, never mind getting anywhere near a diagnosis and a treatment plan. A lack of clinical guidelines means that few clinicians across the NHS have even heard of the disorder. As a result, the tests and support the family so desperately need have not been forthcoming. That is despite the condition’s being recognised by countries across the world and by the World Health Organisation.

The struggle to get a proper diagnosis continues for my constituent. It has been suggested to them that the child may be autistic, but that simply does not stack up with the reality of the symptoms and the circumstances in which they appear. A false diagnosis would prolong the issue, potentially causing more complications, further hardship and distress for a family in desperate need of help and support.

My constituent has been forced to resort to seeking the advice of a private doctor here in London. The cost of travel from my constituency in the north-east, accommodation and the appointment itself is immense, and it is made worse by the pressures of the cost of living crisis. Incurring the cost of treatments that have been shown to be effective for fighting PANS/PANDAS is completely out of the question for my constituent and, I am sure, many other affected families across the country.

It is clear from this testimony and hundreds of others that it is time the NHS began to take the condition seriously and get families the support they need. On PANS/PANDAS Awareness Day back in 2020, PANS PANDAS UK claimed that 42% of paediatricians had never heard of PANS/PANDAS, 47% of people with the condition received no NHS treatment, and 95% said their GP did not suggest PANS/PANDAS when presented with their symptoms.

I am not here to chastise the NHS, which does a fantastic job under extremely difficult circumstances. There is an easy solution that can be worked towards to help the NHS to diagnose and treat patients more efficiently, while getting families the support that they desperately need. That would not only help patients and families to get on with their lives, but save us millions of pounds in the long run. Treatments could reduce the need for extra support and care for children and young people experiencing severe symptoms at a relatively low cost, reducing the strain on the NHS and adult social care budgets.

As more and more stories emerge of children suffering from PANS/PANDAS, it is only a matter of time until we can no longer pretend that the condition does not exist or can be explained away elsewhere. Let us put an end to that as soon as possible, get support to the families who need it and reduce the strain on schools, the NHS and social care services, which are all left to pick up the pieces.

Photo of Marion Fellows Marion Fellows Scottish National Party, Motherwell and Wishaw 10:25, 12 September 2023

It is a pleasure to serve under your chairship, Mr Dowd. I thank the Backbench Business Committee for granting, and Wendy Chamberlain for securing, this really important debate. I also thank PANS PANDAS UK for its briefing and for the work that it is doing to make more people aware of this terrible condition.

The hon. Member, in her very interesting speech, covered all the various things that families suffer when their children have PANS or PANDAS. It is terrifying for me, as a mother and grandmother, to listen to the horrifying stories from across the Chamber. I am a frequent visitor to Westminster Hall, but I have scarcely ever heard things more profoundly distressing or more echoed across the Chamber. There is a united presence here, and we really need to hear something from the Minister today.

I will not rehearse everything that the hon. Member for North East Fife and other Members said, but the fact that families are having to turn to private healthcare is really upsetting. I know from personal experience how difficult it can be to raise awareness of lesser known conditions and illnesses; I work closely with Sarcoma UK. Let me say this to the folk in the Public Gallery: “Keep at it—keep raising awareness. You have people on board here, in Parliament, and you just need to keep plugging away.”

Anything and everything that we say here today is important, and I know the importance of cross-party support. As the hon. Member for North East Fife knows, I am not in government, but my hon. Friend Martin Docherty-Hughes has been in touch with Scottish Ministers. I will also speak to our health spokesperson and I too can write to the Scottish Health Minister on this issue.

I understand how difficult it is for GPs to know everything. I am well aware that, with regard to sarcoma, I was very lucky that my husband’s condition was picked up by our GP. He has had only two cases of that in the last 40 years he has been in practice. For PANS and PANDAS, we need to get the message out there through training and by taking up the very good suggestion by Andrew Selous that we should all send leaflets to our local GPs. As we say in Scotland, many a mickle makes a muckle. Even if we do only small things, we need to push forward with this.

I urge clinicians to recognise the condition, as that will help to ensure that NHS boards and trusts, and the equivalent in England, provide the necessary support. I also urge all parties—I can only do this in relation to Holyrood, for Members outwith the UK Parliament—to gain a better knowledge and understanding and really push the Scottish Government from that angle as well. I am sure that the hon. Member for North East Fife would agree that if folk, and MSPs especially, know about this condition, that will empower them to challenge the Scottish Intercollegiate Guidelines Network to ensure that people move this issue forward.

I think it is really important that the Minister responds to the points that have been raised. There are many people in this room—especially behind me in the Gallery—who want to hear what she has to say. Families across the UK need NHS help in their distress and for their children. I look forward to hearing what the Minister has to say.

Photo of Abena Oppong-Asare Abena Oppong-Asare Shadow Minister (Women's Health and Mental Health) 10:30, 12 September 2023

It is a pleasure, as always, to serve under your chairship, Mr Dowd, and it is my pleasure to speak for the first time in my new shadow ministerial role.

I congratulate Wendy Chamberlain, and thank her for championing this important issue, which she has eloquently raised. She has previously raised it on a number of occasions, and has in particular talked about her constituent, the nine-year-old girl who I believe is still facing this incredibly challenging condition. The hon. Member spoke on behalf of her constituents today, as other people in the debate have. She has been a champion on the issue by talking about how the conditions affect people—from raising it in Prime Minister’s questions and her work on the all-party parliamentary group on PANS and PANDAS, to securing today’s Westminster Hall debate. I thank her for her work.

I also thank everybody who has contributed to the discussion. They have also spoken passionately about their affected constituents. For example, Selaine Saxby talked about her constituent Jack. My hon. Friend Ruth Cadbury talked about the chronic lack of awareness and about how getting a diagnosis is key, which was echoed by Robin Millar. I commend Andrew Selous for his leadership in taking the time to circulate literature to GPs, who I am sure will find that information useful. I also echo what was said by my hon. Friend Ian Lavery: this debate raises further awareness about the condition.

As hon. Members have mentioned, PANS and PANDAS are a set of conditions that result in an inflammation of the brain, which gives rise to an array of symptoms such as OCD, tics and dietary restrictions. It is a cruel condition that can affect a child overnight and out of the blue. The conditions are often misdiagnosed and blamed on bad behaviour or poor parenting. The symptoms can manifest suddenly and bring about profound life changes, as we know not just from the data but from the stories shared by hon. Members in the debate. I found it particularly concerning that as little as 10% of NHS doctors have heard of the condition. That means many children are being misdiagnosed and mistreated. The charity PANS PANDAS UK estimates that approximately 8,500 children experience the disorders. I send my sincere empathy to everyone who faces those challenges and all the families affected.

Those who need treatment and support face major barriers. There is currently no guidance for PANS and PANDAS written or endorsed by bodies such as the National Institute for Health and Care Excellence, NHS England or the royal colleges. As Members have mentioned, those barriers result in many families being forced to seek expensive private treatment to prevent further suffering.

Recent years have seen a number of important developments on the issue. In April 2021, the British Paediatric Neurology Association published a consensus statement that recognised the lack of high-quality scientific studies and urged

“further research so that robust treatment guidelines may be formulated.”

I would be grateful if the Minister could tell us whether she is aware of that and what engagement she has had with the British Paediatric Neurology Association on the matter. Late last year, the PANS PANDAS working group, in collaboration with the BPNA and others, began the process of developing standards of care, pathways and service models, which it hopes will assist all primary and secondary clinicians. The working group has also recommended that all NHS trusts develop a comprehensive cross-speciality and multidisciplinary team provision to support patients.

On top of that important work and collaboration is the effort made by campaigners to raise awareness of this issue. I thank all campaign groups, families, Members present and members of the public who have signed petitions or written to their Member of Parliament to bring this issue out of the shadows. Having heard from Members of different parties about the disease, the research and the stories of those affected, it is important that the Minister provides clarity about the Government’s position. She confirmed in an answer to a written question earlier this year that her Department had had no discussions with NHS England on the adequacy and consistency of treatment pathways for children living with PANS and PANDAS. Could she please confirm today that the situation has changed? It is also important to know what discussions are being held in the Department and with stakeholders on the development of care pathways for children and young people living with this condition. Finally, what steps is the Department of Health and Social Care taking to ensure that children and young people living with PANS and PANDAS receive effective, patient-centred care?

We must also consider the wider issues. The Government must acknowledge their failures over 13 years to support our health and care providers up and down the country. Patients face day-long waits in A&Es, a record number of workers are off sick, and millions are on waiting lists. In fact, not only are the Government failing on the Prime Minister’s pledge to cut NHS waiting lists, but they have presided over a disastrous decade of growing waiting lists and waiting times. Children suffering from PANS and PANDAS may have to wait many months for their first NHS paediatrician appointment. As stories from the PANS PANDAS UK charity have shown, that is exactly what is happening. Christopher’s parents say:

“The soonest NHS paediatrician appointment was 8 months away, so we arranged to see a private specialist who could help us. This was the best thing we ever did. We came away with answers to what was happening and a care plan, which our GP follows. At present we are still waiting for our first NHS paediatrician appointment.”

The reality is that we need a Government who will build an NHS that is fit for the future. Labour’s first goal is to deliver an NHS that is there when people need it. This includes doing all we can to get waiting lists down and getting people treated on time, just like under the last Labour Government. We have a 10-year plan for change and modernisation, which will include one of the biggest expansions of the NHS workforce in history. We also plan to put individual care and mental health treatment—an issue that has been in the shadows for too long—at the heart of our mission.

Labour’s approach will be different, especially for children and young people. A Labour Government will treat mental health as seriously as physical health. We plan to recruit over 8,500 more mental health professionals to cut waiting times for treatment. We will provide access to specialist support in every school, and every community will have an open-access mental health hub for young people. With Labour, more care will be delivered on people’s doorsteps, out of hospital and in the community. Most importantly, we will focus on prevention and a move towards transformational new technologies. It is Labour that has a plan and a mission to build an NHS that is fit for the future and there for people when they need it.

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women) 10:39, 12 September 2023

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, 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 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 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.

Photo of Julian Lewis Julian Lewis Chair, Intelligence and Security Committee of Parliament

The Minister will have heard the excellent speech made by my hon. Friend 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?

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

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 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. 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.

Photo of Ruth Cadbury Ruth Cadbury Shadow Minister (International Trade), Shadow Minister (Justice)

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.

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

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.

Photo of Robin Millar Robin Millar Conservative, Aberconwy

I have been struck by a couple of things in the debate—one is the cross-party consensus, but another is the uniform distress that Members have relayed. On the point the Minister just made about whether treatment is psychiatric or medical, one of the key points is that PANS/PANDAS is often confused as being psychiatric when it is an infection that has proven susceptible to treatment with antibiotics. That is the kind of basic step forward that we are hoping for today.

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

I absolutely agree. I acknowledge that while the symptoms mimic a mental illness, there is very often a physical cause for those developments. That is why we need to build that evidence base with research to back the guidance that we can give to clinicians who, as colleagues have said, may not be aware of the condition or how to manage it.

Training on PANS is now included in the Royal College of Paediatrics and Child Health curriculum. In April 2021, the British Paediatric Neurology Association issued a consensus statement with the faculty of child and adolescent psychiatry at the Royal College of Psychiatrists. Following concerns about variation in how it was being interpreted across the UK, the new PANS PANDAS working group, as we have heard today, which is being supported by NHS England, issued a statement recommending the development of appropriate service models and pathways back in February. I am keen that we support the working group in its important work bringing the key organisations together so that we can get that consensus out to clinicians in the field.

The work that the working group has done highlights that all children presenting with acute onset neuropsychiatric symptoms should receive a full medical evaluation and signposts clinicians to existing international peer review treatment guidelines. As I have said, while NICE currently has no plans to issue guidance, should the evidence base develop further, and should there be an opportunity to do that, we would look to update clinical policy. NHS England would then consider the development of care pathways for those living with PANS/PANDAS. The key is building that evidence research base.

We have the evidence to sufficiently demonstrate that PANS and PANDAS are discrete disease entities. I hope that answers the question by the hon. Member for North East Fife on whether we recognise that. We absolutely do, but we do not have the evidence and research base on assessment, diagnosis, treatment and management. However, the Department is funding research into rare diseases through the National Institute for Health and Care Research, which is spending over £1 billion a year every year on research particularly into rarer conditions. It welcomes funding applications for research into any aspect of human health, which would include PANS and PANDAS. Applications are subject to peer review and judged in open competition, with awards made on the basis of importance to the topics of patients, health and care services.

The National Institute for Health and Care Research does not just provide funding; it will also provide guidance, whether for academics, clinicians, researchers, the working group, charities or any other organisation. I am happy to organise introductory meetings with the National Institute for Health and Care Research. It has met other groups to explore the types of research it would support and that would build an evidence base. I strongly encourage researchers with an interest in this area to come forward with proposals so that we can develop that evidence base and make real inroads.

Other countries are not necessarily leading the way. Not many countries have international guidance on the issue. I cannot remember which hon. Member referred to this, but the UK and the devolved nations have an opportunity to take a lead, build that evidence base and develop guidance on that basis.

I assure colleagues that I am committed to ensuring that those with PANS and PANDAS get the care they need. We need more high-quality research into these conditions. That is the only way we can get better outcomes for patients. I am happy to meet both the APPG and the working group to take this forwards, because there is an opportunity to develop our knowledge, increase awareness and ultimately to have better outcomes for those children affected.

Photo of Wendy Chamberlain Wendy Chamberlain Liberal Democrat Chief Whip, Liberal Democrat Spokesperson (Work and Pensions) 10:51, 12 September 2023

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.

Robin Millar, who chairs the APPGRuth 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 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.

Sitting suspended.