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PANS/PANDAS UK Charity

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PANS (paediatric autoimmune neuropsychiatric syndrome) and PANDAS (paediatric autoimmune neuropsychiatric syndrome associated with strep) are devastating neuropsychiatric conditions that are currently poorly recognised, diagnosed and supported both medically and in schools.  

One estimate suggests that up to 1 in 200 children suffer from this condition. 

 

Resources for parents including diagnostic criteria and details of local support groups. 

Resources for health professionals  

Resources for teachers and schools 

Teacher training package 

Facebook group for parents/caregivers 

Facebook group for Young People age 12-17 with the condition. 

Facebook group for Adults 

Links to further Research 

Patient Information resources

Accessible website 

Costs

Free at point of access, supported through the PANS/PANDAS UK Charity.

Activity Period

45497 Please join our Facebook group PANS PANDAS UK, where you can obtain further support as and when needed.

Is referral required?

N

Referral and Availability Notes

Self-referral, Education provider (consent obtained), SEND Specialists and Educational Psychologists .

Do you cater for special dietary requirements? If so can you provide details?

No

Related Links

https://www.panspandasuk.org/for-educators https://static.wixstatic.com/media/5769d0_81c345ac73b34ece84dca5a6f8c0c5bb~mv2.jpg/v1/fill/w_353,h_499,al_c,q_80,usm_0.66_1.00_0.01/Could%20a%20child%20in%20your%20school%20have%20PANS%20o.webp https://www.panspandasuk.org/awareness-videos?wix-vod-video-id=3ee0cdfb993846e09006ca76f6272924&wix-vod-comp-id=comp-ke7175ux
https://www.panspandasuk.org/medical-guidelines https://www.panspandasuk.org/blog 

Local Offer

  • General 1 Is your service accessible, consider in general terms how you make your service accessible, in addition to any specific premises issues

    We provide support for parents/carers via our accessible website, our facebook group PANS PANDAS UK, and people can contact us via info@panspandasuk.org for more information.

  • General 2 What are the eligibility criteria for your service, please include any age restrictions, types of need catered for, etc

    Parents/carers of children who are displaying symptoms associated with the condition and/or diagnosed with the conditions.  Affected children can be in mainstream, alternative, specialist provision or electively home educated. 

  • General 3 How are referrals / applications made to your service, include details of who can refer/apply and referral and application process

    Parents who would like to investigate if their child has PANS or PANDAS can request to join our Facebook support group. Educators can refer families to our service.

    https://www.panspandasuk.org/for-educational-professionals

  • General 4 What is your service standard for responding to referrals / accessing services, include timescales for responding to referrals and accessing services

    Our response to our community is swift and people who contact us via our website contact form will receive a response within 5 working days.

  • General 5 Who provides / funds your service

    Voluntary/Charitable

  • General 6 Are children, young people, parents / carers charged for your service

    No

  • General 7 Details of charges, whether any help is available with costs

    Free at point of access, supported through the PANS/PANDAS UK Charity.

  • General 8 Feedback and complaints procedure

    Any feedback and complaints can be expressed via the following link:

     

    https://www.panspandasuk.org/contact

  • General 9 How will I know my child is safe using this service

    We provide support to parents/carers.

Last updated:

West Berkshire Council do not promote or endorse any of the services listed in this Directory. For more information on this please read our disclaimer.

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