PIF is working with Scleroderma and Raynaud’s UK on a Perfect Patient Information Journey for Scleroderma, using the PPIJ methodology tested in our pilot project with St Mark’s IBD Service.

Phase 1 of the project involved consultation with people with scleroderma and healthcare professionals treating the condition to identify the key information points on a journey with scleroderma and any information gaps which need to be addressed. It completed in 2021.

Phase 2 starts in 2022 and will bring people with scleroderma and healthcare professionals together to identify priorities for change and to  develop and test information solutions. 

Scleroderma is a rare condition so rather than targeting one centre and testing the impact of new information we are working with a number of clinical leaders and patients to improve signposting to existing SRUK resources and develop proposals for new projects to plug any gaps identified.