The release of Reform Scotland’s paper ‘Absent Minds: Attendance and Absence in Scotland’s Schools‘ in October 2023 brought with it some difficult to hear views around the prospects for young people who are struggling with school, as well as opinions on the competency of parents. It is a situation I understand all too well, as both a teacher and a parent of a child who is unable to attend school.
PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are both post-infectious disorders whose symptoms have many crossovers with anxiety, mental health disorders, as well as neurodivergent conditions. In PANS and PANDAS however, the underlying cause is thought to be an abnormal immune and/or inflammatory response to common infections such as strep (in the case of PANDAS), Chickenpox, flu, Covid-19, or indeed any trigger that provokes an immune response.
The symptoms of PANS and PANDAS include OCD, tics, eating restrictions, anxiety, behavioural regression, sleep issues, emotional lability and depression, changes in behaviour (irritability/aggression/oppositional behaviours), sensory issues and urinary problems. These symptoms often come on suddenly following an infection, however depending on the severity of the symptoms they may not always be noticed at first or linked as being related to each other.
PANS and PANDAS are relatively newly identified conditions, with PANDAS being identified in 1998, and PANS in 2012. PANDAS is recognised by the World Health Organisation, having been given an ICD-11 diagnostic code, however in the UK there are no NICE guidelines for diagnosis and treatment.
Unfortunately, many medical practitioners are unaware of, or poorly informed about, the conditions. This leads to a situation where many children with acute-onset neuropsychiatric symptoms do not have access to any medical testing or treatment and, instead are referred by their GP to CAMHS, where there is a long waiting list.
Once they are eventually seen, depending upon the severity of their symptoms there can then be a long wait for treatment, which can often involve powerful psychiatric medications. For many children these medications are ineffective, as they do not address the root cause of the symptoms. In addition, children can receive multiple diagnoses for conditions such as ADHD, Tourette’s, ASD, ARFID, or OCD, but again these are not addressing the cause of the symptoms, with conventional treatments for these conditions often proving less effective than expected.
The good news is that, once diagnosed, the conditions are treatable using simple, inexpensive and widely available antimicrobial and anti-inflammatory medications, in conjunction with supportive psychological therapies. While research is still developing in this area, there is emerging evidence to suggest that some children return to their baseline following initial treatment, for others it is a longer process-there is no ‘one size fits all’ solution. Sadly, in the UK it is currently extremely difficult to get a diagnosis on the NHS, with many families finding themselves with no option but to seek private medical care.
So how does this link to education? Whilst some children with PANS or PANDAS are able to attend school, others find it more of a challenge. In a survey carried out by PANS PANDAS UK, 14% of parents and caregivers reported that their child had attendance issues prior to the onset of symptoms. Following the onset of symptoms this increased to 77%, increasing further to 86% when children relapsed.
This is why I felt the need to raise the question of PANS and PANDAS in response to the Absent Minds report. If we know that this is an under-recognised condition, and we know that children with the condition experience significant attendance challenges, then it seems likely that some of the absences across Scotland’s schools could have a post-infectious immune response as their root cause, especially given that
we have just been through a global pandemic and it has been recognised that Covid-19 has had neurological impacts. This is an area that urgently needs more research and awareness, which starts with an understanding of the incidence of the conditions. Early discussions are underway around the gathering of this data.
So, what can the education sector do? Schools have a crucial role in raising awareness and signposting. As this is a medical condition, it is not something that can be diagnosed within a school, however schools have a role to play in terms of spotting early signs and signposting the condition to parents and carers. In addition, they can help by providing evidence of changes in a child’s presentation. There is also a significant role for schools in terms of understanding the condition, and supporting affected children, helping them to stay in education.
As mentioned before, awareness is currently low, but it is growing. PANS PANDAS UK, with support from NHSE, has developed a working group with numerous Royal Colleges, with the aim of developing diagnosis and treatment guidelines. There is support for this at Westminster, with an active All-Party Parliamentary Group, and a recent back-bench debate where health minister, Maria Caulfield, acknowledged the conditions and pledged her support to raise awareness and prioritise research.
In contrast, despite repeated attempts, families in Scotland are struggling to engage Holyrood on the issue. Whilst NHS Scotland will need to follow once treatment guidelines are developed for the UK, with the current level of engagement, we will be several years behind. Scotland needs to take its place at the table, to understand the scale of the problem, and to grasp the potential benefits of taking action.
The focus here should be on improving the life chances for these children and relieving the trauma and suffering that they and their families are going through. So far trying to raise the issue from that angle has had little success – I have been repeatedly reminded that it is a rare disease, and that there are many rare diseases. Imagine that if through offering appropriate diagnosis and medical care to these children (which is one of their rights under the UNCRC) you could simultaneously significantly reduce attendance issues across the country, as well as reducing the CAMHS waiting list, allowing other children to be seen sooner. In addition, you would reduce financial costs being paid out in Child Disability Payment, Carers Allowance and other benefits, free up spaces in specialist schools, and psychiatric units, reduce some of the challenging behaviour in schools… The list goes on.
My purpose in writing this blog is to raise awareness and to call for action. There are too many children suffering with this condition. It is debilitating and traumatic for the children and their families. The health of these children should be the priority and, as educators, we have a responsibility to support that, through educating ourselves and others about the conditions, raising awareness and assisting in evidence-gathering and research.
For more information on PANS and PANDAS please visit the PANS PANDAS UK website www.panspandasuk.org
PANS PANDAS UK offers regular training for education professionals which gives an overview of the conditions, the impact that they have on children in schools, and how schools can help.
Gillian Mathewson is a Principal Teacher of Mathematics (currently on a career break to support her child). She is the Scottish Education Representative for the PANS PANDAS UK charity.