Pushing for change for PANS and PANDAS
Pushing for change for PANS and PANDAS
2023 was a year which saw some very promising steps towards improved healthcare for people with PANS and PANDAS in the UK. The PANS PANDAS Steering Group (PPSG) was formed in late 2022 with the support of NHS England. This group published a statement in 2023 which recognised that access to healthcare across the UK for these conditions was uneven and recommended that NHS trusts should develop multidisciplinary teams to improve the service for these patients.
Building on this foundation, the PPSG has now established and oversees four sub-groups.
The first of these groups is the Research Group. More research into PANS and PANDAS will play an important part in making sure that the NHS is able to provide improved services with accurate diagnosis and treatment. The first activity of this group has been to submit an application for a UK-wide surveillance study which will give an indication of the number of people presenting with symptoms of PANS and PANDAS. This information will play a critical role in encouraging research into the conditions and allowing the NHS to understand better the need for improved services. Following on from this, the Research Group will look to establish UK-led trials into which treatments are most effective in treating PANS and PANDAS.
Working in parallel with the Research Group is the Consensus Guidelines Development Group. This group should begin work in Spring 2024 and will gather professionals from the fields of Neurology, Psychiatry, Immunology, Infectious Diseases, General Practice, Nursing, Clinical Psychology and Paediatrics from across the UK nations. Attendees from both paediatric and adult health services have been invited and consideration will be given to paediatric care and also to transitions and how to improve care for an adult cohort of patients. PANS PANDAS UK and parent representatives will be in attendance, as will patient representatives (both under and over 18 years of age).
The purpose of this group is to reach agreement on a UK guideline for the treatment of PANS and PANDAS, based upon what is currently known about the conditions. These guidelines are Royal College guidelines rather than NICE guidelines (for which the results of the surveillance study and further UK research are necessary). The Consensus Group recognises that, whilst work progresses towards the point where NICE guidelines are appropriate, there is a clear need for better provision in the meantime.
The third of the sub-groups is the Service Specification Group which will follow on directly from the guidelines work. This group will look at creating practical pathways and services for PANS and PANDAS which are able to deliver the principles laid out in the guidelines.
The final group, which is in early stages of development, is the Education, Social Care and Health Group. This group aims to create a usable guide for professionals, children, young people and their families which will improve support available across education, health and social care.
We know that none of this can happen quickly enough for all those currently living with PANS and PANDAS. Historically, access to appropriate healthcare and support has been incredibly limited and the situation remains very challenging across the UK. We are doing our utmost to drive the work of these groups forward and to work collaboratively with the government, the Royal Colleges, NHS England and the National Institute for Health Research to ensure that prompt and appropriate support is available across the UK for everyone living with these conditions within as short a time as possible.
If you have any questions or comments, please do get in touch with us at feedback@panspandasuk.org
