Evaluation of the Lupus Service in NHS Wales
Background
Systemic Lupus Erythematosus (SLE), commonly known as lupus, is a complex autoimmune condition that affects multiple organs and systems. The unpredictable nature of the disease and the difficulty in receiving a timely diagnosis present significant challenges to both patients and healthcare providers. In Wales, the experiences of people with lupus and the clinicians delivering their care had not previously been comprehensively evaluated.
To address this gap, the Welsh Government commissioned an independent evaluation of lupus services in NHS Wales, supported by the Musculoskeletal (MSK) Strategic Clinical Network and the NHS Wales Executive. The work was also supported by Lupus UK, who contributed to the study design and assisted with the development and dissemination of the survey.
CEDAR's role
CEDAR conducted the National Evaluation in 2024. Using a mixed-methods approach, the team gathered data from over 280 people with lupus through surveys, in-depth interviews, and focus groups, as well as input from 17 clinicians across every Health Board in Wales.
CEDAR’s work aimed to:
-
Understand the lived experiences of people with lupus across Wales.
-
Identify strengths and challenges in current lupus care.
-
Highlight opportunities for service improvement.
Key themes from the evaluation included access to timely diagnosis, variability in care quality, lack of coordination across specialties, emotional wellbeing support needs, and the importance of multidisciplinary approaches. The report offers actionable insights to support future service development and more responsive, equitable care for people with lupus.
CEDAR would like to express sincere thanks to all participants who took part in the evaluation.
Report
The full evaluation report was published in May 2025 following an official Welsh Government press release. The report is available in both English and Welsh below: