PANS and PANDAS

Debate between Ruth Cadbury and Wendy Chamberlain

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.