OP0276-PARE CREATING POLITICAL LEVERS TO IMPROVE AXIAL SPONDYLOARTHRITIS CARE

Abstract

Background:Research carried out in 2016 by NASS showed that the range and quality of axial spondyloarthritis (axial SpA) services generally offered around the UK were variable 1. The publication by the regulator, the National Institute for Health and Care Excellence (NICE), of a Guideline for Spondyloarthritis (NG65) in 2017 2 and the corresponding Quality Standard (QS170) in 2018 3, for the first time provided national guidance and standards of services that should be available for people with axial SpA. National oversight of the implementation of these however was missing.Objectives:NASS worked with Parliamentarians to establish the All-Party Parliamentary Group for Axial Spondyloarthritis in January 2019. We gave it a very specific objective - to oversee the implementation of NH65 and QS170. The group seeks to improve axial SpA services in England whilst raising awareness of the condition at a parliamentary level, working closely with NASS.Methods:The group is a unique forum in the UK, bringing together patients, clinicians, researchers, policy makers, national bodies and parliamentarians. The group has met five times covering a range of topics including the delay to diagnosis, the uptake of NG65 and hydrotherapy.In 2019 the group carried out a national inquiry into the standards of axial SpA services in the UK, developing a ten-question quality framework, based largely on the NICE Guideline recommendations and Quality Standard. In July 2020 a meeting was convened to discuss the impact of COVID-19 on axial SpA services. The meeting presented research carried out by NASS and M&F Health with patients and clinicians respectively.Results:The results of the national inquiry for England were published in January 2020 4. The inquiry found that large discrepancies remain in the provision of axial SpA services. Only 21% of local commissioning bodies have an inflammatory back pain pathway, and less than half of NHS providers have a specialist axial SpA clinic.The results of COVID survey shows significant impacts on the health of axial SpA patients and on the availability and modality of rheumatology services. The APPG later published a report with a set of recommendations 5, creating minimum service specifications for axial SpA services during crisis periods such as the recent pandemic, as well as service recovery. Comment on this research was also published in The Lancet Rheumatology 6.In September 2020 the work of the APPG led to a debate in Parliament on delayed diagnosis in axial SpA.Discussions on the future of hydrotherapy services has resulted in the mobilisation of stakeholders across condition areas.Conclusion:All All Party Parliamentary Group is already proving to be an effective political lever to improve axial SpA care. It has shown huge variations in the standard of care and provision of services still remain and has brought this to the attention of Parliamentarians, policy makers and clinicians.