Published today, the NHS Wales Lupus Service Evaluation was produced by CEDAR, an independent NHS research group, and commissioned and funded by Welsh Government, working in partnership with the Musculoskeletal Strategic Clinical Network and the NHS Wales Executive.
The report gathers detailed experiences of services for people with lupus, drawing on the perspectives of people with lupus (service-users) and clinicians (service-providers) across NHS Wales.
Lupus is a complex autoimmune condition that often impacts multiple organs, causing cumulative damage and requiring coordinated care from various medical specialists. The disease's unpredictable nature presents significant challenges for both patients and healthcare providers, with many patients experiencing long delays in receiving a diagnosis.
"The service-user survey included people with lupus from all health boards and council areas in Wales. The results revealed variability in experiences and satisfaction with lupus care. While some patient participants reported positive experiences, particularly regarding medication access and support from their rheumatology consultant, a substantial proportion expressed dissatisfaction with aspects of their care.
"Key concerns included difficulty accessing urgent care during flare-ups, inadequate emotional wellbeing and mental health support, and a lack of coordinated care between healthcare providers. Many also reported that non-specialist healthcare providers, such as general practitioners and emergency departments, lacked awareness and understanding of lupus, which they felt negatively affected the overall quality of care received.
"The team at CEDAR are incredibly grateful to everyone who took part in this evaluation, sharing their experiences and perspectives to help shape the future of lupus care in Wales. The voices of people with lupus and clinicians who support them have been central to this work."
"Lupus is a condition that can severely affect a person’s quality of life and lead to long-term health complications, impacting all aspects of daily living including physical and psychological impacts.
"This report clearly shows a clear and urgent need for more responsive and coordinated services for people with lupus in Wales. Through enhancing access to specialist care, monitoring people with lupus, providing timely interventions during flare-ups, and addressing the mental health and emotional wellbeing needs of people living with lupus, patient experiences can be improved."
"I appreciate all the hard work that has gone into listening to the voices of people with lupus in Wales. This report has highlighted the current challenges we face in living with this complex chronic condition, and it brings hope that this will mark the beginning of the specialised care and support we need."
"This detailed and valuable report builds on the previous evaluation of care for people with Lupus in Wales published by Wright et al in 2023. It provides an in-depth analysis of the current level of service available to people with Lupus in Wales and gives clear direction for where improvements are needed. As a Clinical Implementation Network we are keen to focus on key areas highlighted by the report.
"First, shortening the time to diagnosis, a metric that can be evaluated through participation with the National Early Inflammatory Autoimmune Diseases Audit. Second, ensuring patients with Lupus have access to clinical and emotional support during treatment flares, by pressing for funding for a network of Lupus Specialist Nurses across Wales and by increasing the co-production of care delivery with Lupus UK. Our third key area for improvement will involve co-ordination of multi-speciality input for patients with complex lupus by working to establish multi-disciplinary teams and networks within Wales, but also linking with networks in England where necessary.
"There is work to be done and this report will serve as an excellent resource to guide us."
For more information, please contact sarah.cosgrove2@wales.nhs.uk