PANS and PANDAS

Julian Smith Excerpts

Tuesday 12th September 2023 Westminster Hall

[Wendy Chamberlain]

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

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

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

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

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

[Wendy Chamberlain]

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

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

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

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

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

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