Welsh Government is keen to understand user experiences of lupus services in Wales, and CEDAR is leading an independent evaluation to help understand the views of stakeholders.
Lupus, also called systemic lupus erythematosus is an incurable autoimmune disease that is estimated to affect approximately 2,000 people in Wales. It is thought to be genetic in origin and approximately 90% of cases occur in females, most commonly those of childbearing age.
Welsh Government is interested in the experience of patients and the views of the clinical community. They are keen to gather wide stakeholder feedback on current services to ensure future development supports those living with lupus.
This evaluation of lupus services will focus on gathering feedback from people across Wales who have a diagnosis of lupus, as well as from key clinical staff involved in the management of people with lupus. The methods will include the use of surveys, interviews and focus groups. This information will help Welsh Government understand what works well, and will identify any potential improvements in the current service provision.
We will be contacting people with lupus across Wales throughout late 2023 and early 2024 via their clinical teams to invite them to take part in this project. If you have lupus and are interested in getting involved, please contact Harley Anderson (Harley.Anderson@wales.nhs.uk).
For more information on the project, see below links for participant information sheets in both English and Welsh: