GSK (in collaboration with patients, clinicians, advocates and representation from international lupus patient organisations) developed the ‘A Vision for Lupus’ initiative aimed at highlighting the current gaps and inconsistencies in lupus care and a vision for improving the future for the estimated five million people living with lupus.
For World Lupus Day 2019, they have now published their report which you can access below;
Summary of Findings
Although progress has been made in the management of lupus in recent years, the following challenges were identified:
• Lack of awareness of the condition amongst general public and Health Care Practitioners which may lead to people with lupus feeling misunderstood, isolated and alone
• Limited access to specialist and multidisciplinary care
• Barriers to participation in clinical research
Calls to Action to improve lupus care
1. Awareness: Raise awareness of lupus amongst the general public, people living with lupus, their families and healthcare providers to help achieve early diagnosis and help people with lupus feel more acknowledged, understood and supported.
2. Service Delivery: Improve access to specialist and multidisciplinary lupus clinics to ensure people with lupus are receiving quality care that addresses all aspects of this complex, multisystem disease, thereby improving overall quality of care.
3. Clinical research: Raise awareness of ongoing clinical trials, encourage people with lupus to consider taking part in research and facilitate easier access to these trials, in turn, empowering people with lupus to make autonomous decisions in the management of their condition.