FOI – 2025-3159 PANS/PANDAS Steering Group (HTML)

Date received – 04 Nov 2025 | Date responded – 20 Nov 2025

Request

I am writing to request information under the Freedom of Information (Scotland) Act 2002 regarding NHS National Services Scotland’s response to recent communications about Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS).

In May 2025, the PANS PANDAS Steering Group (PPSG) wrote to the chief executive of all NHS boards in Scotland to inform them of the ongoing work in the development of clinical guidelines for PANS and PANDAS. A link to this, and other referenced communication and statements can be found at the bottom of this email.

Referenced in that letter, is a letter written by Neil Gray MSP, Cabinet Secretary for Health and Social Care to Wendy Chamberlain MP, outlining the support available in Scotland for those affected, as well as confirmation that the Department for Health and Social Care in England officially recognises that the PPSG 2023 statement supersedes the 2021 BPNA Consensus Statement.

A request was made to the Cabinet Secretary to confirm if this was also the status in Scotland, but we were informed that we would need to make that request to each individual NHS board in Scotland.

With that in mind, could you please provide responses to the following:

Recognition of Updated Guidance

Does NHS National Services Scotland recognise that the 2023 PANS PANDAS Steering Group Statement supersedes the 2021 BPNA Consensus Statement?

Clinical pathways and referral options.

The Cabinet Secretary stated that there are multidisciplinary services for PANS and PANDAS currently available in Glasgow and Edinburgh, and would continue to monitor the recommendations from the PANS/PANDAS Working Group to explore how best practice can be expanded across other health boards. What steps are NHS National Services Scotland taking to prepare for the publication of the guidelines to ensure that those affected by PANS and PANDAS across Scotland are supported?

Response

We have now completed the search of our records and can provide you with the following information:

1. Recognition of Updated Guidance

Does NHS National Services Scotland recognise that the 2023 PANS PANDAS Steering Group Statement supersedes the 2021 BPNA Consensus Statement?

NHS National Services Scotland (NSS) is a special national Health Board (HB) that has a specific role within the NHS in Scotland. NSS includes functions such as the Scottish National Blood Transfusion Service, Specialist Healthcare Commissioning and National Procurement. A full directory of services provided by NSS can be found here.

NSS has no role in the investigation or treatment of patients with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) or Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). As we do not commission or provide specific clinical services for these conditions, we are unable to comment regarding the recognition of these statements. To obtain the requested information, you may wish to contact the territorial HBs using the e-mail addresses below:

• Ayrshire and Arran – foi@aapct.scot.nhs.uk
• Borders – foi.enquiries@borders.scot.nhs.uk
• Dumfries and Galloway – dg.feedback2@nhs.scot
• Fife – fife.foirequestfife@nhs.scot
• Forth Valley – fv.freedomofinformation@nhs.scot
• Grampian – gram.foi@nhs.scot
• Greater Glasgow & Clyde – foi@ggc.scot.nhs.uk
• Highland – nhsh.foirequestshighland@nhs.scot
• Lanarkshire – foi@lanarkshire.scot.nhs.uk
• Lothian – foi@nhslothian.scot.nhs.uk
• Orkney – ORK.FOIrequests@nhs.scot
• Shetland – shet.foi@nhs.scot
• Tayside – tay.informationgovernance@nhs.scot
• Western Isles – wi.foi-requests@nhs.scot

2. Clinical pathways and referral options

The Cabinet Secretary stated that there are multidisciplinary services for PANS and PANDAS currently available in Glasgow and Edinburgh, and would continue to monitor the recommendations from the PANS/PANDAS Working Group to explore how best practice can be expanded across other health boards. What steps are NHS National Services Scotland taking to prepare for the publication of the guidelines to ensure that those affected by PANS and PANDAS across Scotland are supported?

As mentioned above, NSS does not commission or provide specific clinical services for these conditions, therefore NSS is not taking steps to prepare for the publication of these guidelines. You may wish to contact the territorial HBs using the e-mail addresses above.

I trust you will find the information of assistance and if you require any further information, please do not hesitate to contact us.

If you are unhappy with any aspect of how we have dealt with your request, you can make representations to us asking us to review the handling of your request.

If you require any further information, please contact the Associate Director Governance and Board Services (Board Secretary) within 40 working days of the date of this correspondence.

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