Department of Health writes to PANS PANDAS Steering Group

We are pleased to share with you correspondence received by the PANS PANDAS Steering Group (PPSG) from the Department of Health and Social Care (DHSC).

In September, the PPSG became aware that correspondence from DHSC was being issued which was suggestive that the Government was not fully abreast of work underway to improve care for people with PANS and PANDAS. The Steering Group addressed this in a letter to Health Minister, Wes Streeting, which set out the efforts of the PPSG to tackle the variation in care for the conditions and addressed some inaccuracies about the most recent UK guidance for PANS and PANDAS.

The PPSG received a full and thorough response from Baroness Merron (Minister for Mental Health) in which she:

• Acknowledges the efforts of the Steering Group to develop standards of care and to define pathways and service models
• Recognises that the 2021 British Paediatric Neurology Association (BPNA) Consensus Statement has been superseded by the PPSG statement (2023)
• Acknowledges that the PPSG has signposted clinicians to international peer-reviewed guidelines whilst work proceeds on the development of a UK clinical guideline.
• Recognises how serious and debilitating symptoms of PANS and PANDAS can be

We are aware that many families continue to face rejected referrals from NHS Trusts on the basis of clinicians following guidance from the 2021 BPNA Consensus Statement. We anticipate that this letter from the Department of Health, which clearly states that the BPNA Consensus Statement is not considered to be the most current guidance for PANS and PANDAS in the UK, may be helpful in improving access to assessment and care for children and young people presenting with symptoms of PANS and PANDAS.

We are exploring avenues for funding to facilitate further research into the conditions and look forward to working with the Department of Health on this matter.

Click here to read the PPSG’s letter to the Health Minister.

Click here to read the response from the Department of Health.