PANS PANDAS and Education Position Statement:

 

Individual Advocacy 

We know that many families are struggling in the current climate. As a small charity, we sadly are not currently able to offer individual 1:1 educational support and advocacy to families. We are currently working on sourcing alternative forms of advocacy. We do hope that you will find the following information helpful

Many families with children living with PANS and PANDAS have challenges in the education system. These include:

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Low Levels of Awareness

• Many schools have not heard of or received any training in the conditions. As a result, they are unlikely to recognise the early signs of the condition, or to be aware of the often-sudden onset.

• Schools may not have known the child before they developed PANS or PANDAS. They therefore will not be in a position to recognise the extent of the ‘change’ in the presentation of the child.

• The symptoms of PANS and PANDAS can present very similarly to widely recognised and understood conditions such as Autistic Spectrum Condition (ASC) or Attention Deficit Hyperactive Disorder (ADHD).  The symptoms can therefore easily be misinterpreted. Children can of course have more than one condition, and may have PANS or PANDAS in addition to other, already diagnosed, conditions.

• Children with PANS and PANDAS can suffer with a wide range of different symptoms. These may not necessarily all be recognised, or seen as linked to the same condition, for example handwriting deterioration and eating restrictions. Sometimes it is the most dramatic symptoms such as anxiety or OCD for example that are focused on, and some of the other signs can be ‘missed.’

 

Issues within Schools

• Some children with PANS and PANDAS ‘mask’ in schools and so professionals are not observing the same symptoms or the same level of severity as parents/caregivers are reporting at home.   Children can also suffer from severe ‘internal’ symptoms such as compulsive mental rituals that cannot easily be observed.

• Many of the signs of PANS and PANDAS are similar to red flags in safeguarding. The wide range of changing symptoms can be very confusing for schools and parents/carers alike.

• Schools may misinterpret the symptoms of PANS and PANDAS as poor behaviour choices rather than as the result of a medical condition. They may then inappropriately apply behaviour sanctions such as detention or repeating work.

• Many children with PANS and PANDAS struggle to attend school. This is likely to be for lots of different and complex reasons related to their brain condition.  Parents/Caregivers can find themselves in the difficult position of supporting a child who is enduring multiple complex and distressing health symptoms, which are either not being recognised or are being misinterpreted.

 

Medical Issues

• PANS and PANDAS are medical conditions and schools often ask for medical evidence and advice. It is currently it is very challenging to receive a confirmed diagnosis and a treatment plan.

• There is a lack of clarity in some schools about accepting a diagnosis from an independent clinician (although there is no case in law for an independent diagnosis to be rejected purely on the basis that it is from a private clinician).  Currently it is very difficult for children with PANS and PANDAS to receive a diagnosis from the NHS.

• Clinicians are using lots of different names for the conditions including PANS, PANDAS, streptococcal driven immune mediated neuro-behavioural disorder, immune mediated behavioural issues and post infectious inflammatory neurological disorder. This can cause confusion when parents/caregivers and professionals are using different names to those used in clinic letters.

• Children are struggling to access effective medical treatment, which is leading in some cases to much more severe needs in education over a longer period of time.

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How can I support my child with PANS and PANDAS in school?

 

Share the education resources from the website with your class teacher or Special Educational Needs Co-ordinator (SENCo)*.  Relate the resources specifically to your child’s presentation and symptoms. Evidence where possible your child’s presentation before they became unwell, using school reports and observations for example.

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PANS and PANDAS can sometimes cause learning difficulties. These are known as Special Educational Needs and Disabilities (SEND)*.  Ensure that the SENCo and class teacher understand how learning can be affected in these conditions, and at which level your child was achieving before they became unwell. If your child develops SEND as a result of PANS and PANDAS, the school can put a SEN support plan* in place or apply for an Education, Health and Care Plan (EHCP).* Parent/carers can also apply for an EHCP.

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PANS and PANDAS are medical conditions.  Ask whether your child should have an Individual Health Care Plan (IHCP)* in school.  This is a plan specifically to support children with medical conditions, and is different to an Education, Health and Care plan (EHCP) (although some children might have both). Your child does not need a confirmed diagnosis, but should be supported based on their symptoms and presentation.

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Sometimes children with PANS and PANDAS are too unwell to attend school. After 15 days (these do not have to be consecutive, but do need to be for the same condition) schools can request a referral to Medical Needs Tuition.  This is a temporary form of tuition to support children with physical and mental health needs who are not able to attend school.

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Seeking further support

If parents/caregivers require further support within education and the SEND process, there are several organisations that can provide fantastic resources, advocacy and further signposting as necessary.   

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It is likely that many of the professionals working in education, SEND advocacy, social care and health will currently be unfamiliar with the conditions. It will therefore be helpful for parents/caregivers to explain that it is a less well-known condition and to provide the educational and health resources to any professionals supporting children living with PANS or PANDAS.  This should be done as early as possible in the process of seeking support, and preferably before children are assessed.

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You will find a wide range of useful resources, information and training on  health and education throughout this website.

 

Sources of Education support

Please note that conditions with overlapping symptoms have also been included (the inclusion of these links is not a sign of endorsement).

 

ACE - the Advisory Centre for Education - They provide advice about Admissions, Attendance, Bullying, Exclusions and Special Educational Needs.

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Anti-bullying Alliance – They provide useful information and advice about dealing with bullying and the potential impacts it can have.

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www.autism.org.uk – The National Autistic Society’s website includes a wealth of information on education including advice for parents/carers and teaching professionals.

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British Dyslexia Association - They provide assessments for dyslexia and have extensive information for education professionals and parents. This includes advice on EHCP’s, reasonable adjustments, exam access arrangements and choosing an appropriate provision.

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Bullying UK - They offer on line advice and support to try to prevent or deal with bullying including information for children.

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Contact a Family (CaF) – They provide online, printed and helpline advice on education, benefits and finances, childcare, social care and medical information.

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Cerebra -Supporting children with brain conditions. They provide guides to understanding children’s right to education and transport. They also offer template letters to support parents/carers to communicate with educational bodies.

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Council for Disabled Children - This is the umbrella body for the disabled children's sector bringing together professionals, practitioners and policy-makers. Their resources hub contains a wide collection of briefings, guidance, advice and tool kits on education policy and practice.

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www.gov.uk/civil-legal-advice - Civil Legal Advice (Legal Aid). They provide Free legal advice on education law matters paid for by legal aid, SEN, discrimination and judicial review (e.g., for children not receiving education/unlawful exclusions etc.) This is for anyone who is financially eligible to legal aid

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Dyslexia research trust - They offer a diagnosis service advice, and comprehensive resources for teachers

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Dyspraxia Foundation - They offer information for individuals and families affected by developmental dyspraxia. This includes raising awareness of dyspraxia amongst educational professionals.

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Education Otherwise - This is a UK based membership organisation which provides support and information for families who choose to educate their children at home (Elective Home Education)

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http://familylives.org.uk- This is a national charity offering information support and advice about parenting, including challenging behaviour and emotional wellbeing. There are also details about specialist advice and parenting groups in local areas.

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Family Fund - Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children.

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www.iassnetwork.org.uk/find-your-iass/ - Information, Advice and Support Services - IAS Services have a duty to provide information, advice and support to disabled children and young people, and those with SEN, and their parents. They are statutory services and are free, impartial and confidential.

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www.ipsea.org.uk - IPSEA - Independent Parental Special Education Advice. This is a charity which offers legal advice, support and training to ensure children and young people with Special Educational Needs and Disabilities (SEND) access the right education

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https://notfineinschool.co.uk/ - Not Fine in School was created as a resource for the growing numbers of families with children experiencing school attendance barriers. This website contains information and resources to support families managing a child struggling to attend school.

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Right to Participate - This website is part of Disability Rights UK’s Right to Participate project, funded by the Legal Education Foundation. The project aims to increase awareness of the Equality Act, especially the ways it can protect disabled people from discrimination in everyday situations.

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https://www.sibs.org.uk/about-sibs/- This is the only UK charity representing the needs of over half a million young siblings growing up alongside a brother or sister with additional needs. It provides information and support for the potential impacts on education for siblings.

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https://www.specialneedsjungle.com - This contains parent lead information and resources for children with SEND, disabilities and health conditions including rare diseases. It contains a wealth of continually updated resources.

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SOS SEN - This is a national charity aiming to empower parents and carers of children and young people with SEN and disabilities to access the help they are entitled to, particularly in the education system.

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www.teamsquarepeg.org – Square Peg campaign to raise awareness of barriers to school attendance and work to effect change on behalf of children & families

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https://www.sunshine-support.org - This is an award winning Special Educational Needs and Disabilities (SEND) consultancy based in England and Wales. They empower and advocate for parents, carers and professionals who support children and young people with SEND.

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www.talkingpoint.org.uk - Speech and Language Services.  Talking Point provides a guide to speech and language services and useful links to other associated websites.

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https://www.tourettes-action.org.uk- Tourette Syndrome is an inherited, neurological condition, the key features of which are tics, involuntary and uncontrollable sounds and movements. TS is a complex condition and a large number of people with the condition will also experience co-occurring features and conditions. The charity contains very comprehensive resources including for education professionals.

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https://www.longcovidkids.org - The charity was set up to represent and support children and young people living with long Covid and related illness. Their extensive information includes comprehensive educational resources.

 

www.kids.org.uk - Young Peoples Inclusion Network – They provide online guidance about both strategy and putting Inclusion into Practice covering issues such as Leisure and Sports Services, Youth Provision, Transport and Independent Living.

 

Glossary

EHCP- Education and Health Care plan- a plan for children and young people up to 25 who require more support than is available through special educational needs support. EHC plans identify educational, health and social needs and set out additional support to meet those needs.

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IHCP- Individual Healthcare Plan- A plan for children with medical conditions to describe the child’s care needs and how their needs will be met at school.

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SEN- Special Educational needs- used to describe learning difficulties or disabilities that make it harder for a child to learn than most children of the same age

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SENCo- Special Educational Needs Co-ordinator, is the teacher who is responsible for assessing, planning and monitoring the progress of children with special educational needs and disabilities (SEND).

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Special Educational Needs (SEN) Support plan- when an education setting has identified a child with SEN, they are required to create a SEN support plan. This might also be called an Individual Education plan or similar.

 

This information will be updated and subject to revision. 

Published 9th November 2022