PANS and PANDAS

Debate between Wendy Chamberlain and Martin Docherty-Hughes

Tuesday 12th September 2023 Westminster Hall

[Wendy Chamberlain]

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

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

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

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

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

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

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

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

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

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

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

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

[Wendy Chamberlain]

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

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

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