On 15th June 2024 we held our first hybrid meeting at both QMC and on MS Teams. We welcomed four public partners in-person and an additional four online. 

Throughout the event, attendees offered valuable perspectives on what it is like to live with a rare autoimmune rheumatic condition. Common themes included: 

• As patients with rare autoimmune rheumatic conditions often look well, their needs may be underestimated. 

• Better continuity of care would lead to patients feeling more in control of their disease and able to influence their outcomes.  

• Patients may have to maintain detailed portfolios of their healthcare information to mitigate the lack of continuity, expertise, and information sharing. 

 We had rich discussions around three topic areas relating to our ongoing work: 

1. Steph shared key messages from a recent project on the impacts of appearance changes due to steroid treatment and led a discussion around developing a funding application to take this work further. 

2. Fiona led a conversation around sharing health data, and how these compared to a recent survey of the general population.  

3. Alice presented her Vasculitis UK-funded project to investigate guided imagery techniques to help people living with illness. 

A number of helpful resources were shared by both public partners and RECORDER staff including cancer charity Macmillan’s book Coping with hair loss, the Hidden Disabilities Sunflower scheme, and Lupus UK’s resource on Getting the most from medical appointments.  

The day concluded with a fantastic sound healing taster session for those who attended in-person. 

We are grateful to Vasculitis UK, Scleroderma and Raynaud’s UK, The Rare Autoimmune Rheumatic Disease Alliance and the rheumatology team at Nottingham University Hospitals Trust for their help in advertising the meeting.