PANS and PANDAS

Ruth Cadbury Excerpts

Tuesday 12th September 2023 Westminster Hall

[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.

--- Later in debate ---

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

It is an honour to serve in this debate under your chairship, Mr Dowd. I thank the hon. Member for North East Fife (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 the hon. Member for North Devon (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 the Member for Batley and Spen (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”.

--- Later in debate ---

[Maria Caulfield]

The Department does not regularly write to GPs because the NHS is operationally independent, but NHS England does and we can certainly speak to NHS England colleagues. They send out regular bulletins on a range of issues to GPs, so I will speak to my primary care colleagues to see whether that is possible. We do not have enough information at the moment about how many children in the UK are affected by PANS and PANDAS. In the US, scientists have suggested that the prevalence there could be as high as one in 200 children.

We have specifically talked about the United Kingdom and England today. Although there is a classification now by the World Health Organisation, very few countries issue guidance on the diagnosis, treatment, assessment and management of PANS/PANDAS, because the scientific evidence is so sparse. When I met my hon. Friend the Member for Aberconwy, we talked about how we can get that evidence base so that we can issue guidance to primary and secondary care providers. We know that symptoms tend to come on suddenly.

We heard from my hon. Friend the Member for North Devon (Selaine Saxby) about the example of Jack and the difference that a diagnosis made. It is often following an infection that children who are healthy and developmentally on track suddenly start exhibiting OCD or other neuropsychiatric symptoms. The hon. Member for Brentford and Isleworth (Ruth Cadbury) is correct that very often a course of antibiotics can improve and tackle some of the symptoms that parents say can change a child overnight such that they can no longer attend school and are suddenly plagued by anxiety and other neurological symptoms.

PANS and PANDAS require a clinical diagnosis based on specific signs and symptoms observed by a clinician. There are currently no lab tests or biomarkers that specifically diagnose those conditions. There is also an element of excluding other diagnoses in the process of diagnosing PANS and PANDAS. That means other illnesses or diseases are considered first rather than assuming it could be PANS and PANDAS.

Although there are currently no national or European clinical guidelines on assessment, investigations or diagnosis, a multidisciplinary team referral often helps speed the process up. That is why we need our primary care colleagues to be aware that this could be the cause of symptoms and to get those referrals in as quickly as possible.

[Ruth Cadbury]

I thank the Minister for her response. She mentions the fact that there is no lab test that can diagnose PANS/PANDAS, but is that not true for other neurological conditions that I mentioned, such as ME and some of the ongoing conditions that people are experiencing from long covid? Sometimes a lab test does not exist because of the nature of what caused the symptoms. Perhaps the medical profession and NHS England need to think slightly outside the box in their search for answers.

[Maria Caulfield]

I absolutely agree with the hon. Lady. NHS England has been happy to work on such issues with the working group. It is embarking on work to roll out a nationwide surveillance study designed to identify the signs and symptoms because, again, it is probably unlikely that we will reach a definitive test that will ever give us a diagnosis, and it is about matching symptoms with a diagnostic criteria. NHS England has committed to doing that, and the Department is happy to support it in its work.

There is the issue about how quickly antibiotics should be prescribed and dispensed, but while one antibiotic may work for one child, it may not work for another, and it is sometimes a case of trial and error before the appropriate treatment is found. Although there is an evidence base for the treatment of symptoms, such as obsessions, compulsions and tics, it is recommended that children and families affected should be offered evidence-based treatments. That is why we absolutely need to build that research base to provide evidence-based guidance to clinicians, whether they are in primary or secondary care. At the moment, NICE says that it does not have the evidence base to put that guidance together, whether that relates to psychological treatments or to medications such as antibiotics. The commitment I can give today is to push and work with the working group, organisations and Members in this place to try to develop that research base.