The Education, Social Care, and Health Group – update

Efforts underway to support families, and professionals  across Education, Social Care, and Health to develop a position statement on PANS and PANDAS.

On Thursday, May 23rd, the Education, Social Care, and Health Group held its inaugural online meeting. This group is one of four initiatives operating under the umbrella of the PANS PANDAS Steering Group. 

Prior to the meeting, the existing research and background context for PANS and PANDAS had been shared. Professionals from various fields within education, social care, and health gathered to listen to three testimonies of lived experiences. These courageous and open accounts will provide the context for identifying current barriers to support, and initiating professional debate on how to address them. Further information was shared about the process, with attendees now working on identifying the needs of families and children/young people living with PANS PANDAS. The shared purpose and commitment of participants was palpable. 

What is the Education, Social Care and Health Group? (ESCHG)

The Education, Social Care and Health Group is one of the four sub working groups operating under the umbrella of the PANS PANDAS Steering Group.   It consists of experienced professionals across the fields of educational psychology, psychotherapy  leaders in social care, teachers, SEND and Inclusion Leads, Commissioning officers and is co-chaired by a Designated Clinical Officer alongside the PANS PANDAS UK Education Lead.

Why has it been created? 

PANS and PANDAS are complex conditions and children/young people and their families often require support from multiple services across health, education and social care.  It is imperative that all relevant professionals are aware of the rapid health developments and current context of PANS and PANDAS whilst awaiting the production and implementation of the UK clinical guidelines.  The ESCHG group is working in close collaboration with the consensus guideline development group, and the draft guidance produced will be reviewed by the PANS PANDAS Steering group.

What are the aims of the Education, Social Care and Health Group? 

To reduce inequity of knowledge and support for families and children/young people living with PANS and PANDAS across Local Authorities. The group is aiming to produce a position statement which will outline the responsibilities of health, social care and education professionals when providing support for a child/young person with a diagnosis of or suspected PANS or PANDAS.  This may include identifying training needs and clarification of current pathways for health treatment and education support. 

When will this guidance be ready? 

Whilst we completely recognise the urgent need for this guidance, It is difficult to state with accuracy when the guidance will be completed; it will in part depend upon the duration of drafting and refining the information through the lens of both families/young people, the relevant professional groups and ultimately the PANS PANDAS Steering Group.  It is intended that the guidance will follow a two phased approach.  Phase 1 will issue approved guidance ahead of the completion of the consensus guidelines; this will focus on how existing systems can provided support in the interim period.  Phase 2 will then issue adapted and refined guidelines following the publication and implementation of the clinical guidelines.   

Whilst awaiting this guidance, we would encourage the signposting of any health professionals supporting families to the PANS PANDAS Steering Group statement which recommends the referral to existing international peer reviewed guidelines. 

Social care professionals can access further information regarding the condition specific factors that are currently leading to a disproportionate number of safeguarding concerns in the  PANS, PANDAS and Fabricated or Induced Illness: A Guide for Social Work, Healthcare and Education Professionals’.

Education professionals can access a wealth of relevant resources including the option to attend free CPD accredited online teacher training through the PANS PANDAS UK website.

Will this information only be relevant to England? What about Scotland, Northern Ireland and Wales? 

Our aim is to support all families, children and young people living with PANS and PANDAS regardless of their geographical location. Before commencing this group, we sought advice from wider professionals who have participated in similar processes for other conditions.  Their universal recommendation was that due to the complexity of both the area of PANS and PANDAS along with country specific systems, it would be expedient for all, to begin this process in England, with further discussions with representatives from Scotland, England and Northern Ireland to follow.

If you have any comments or additional questions about the guidelines, please get in touch with us at feedback@panspandasuk.org.