15 May 2024
Like every diligent interviewee, I did my fair share of web-based research into the world I would be getting into were I successful in securing a job at BSR. I was struck at the time by the breadth of patient representative organisations out there providing invaluable support to the 20 million people across the UK living with a musculoskeletal condition. As I would be driving the Society’s strategy on service improvement, I knew that each of them would be a vital stakeholder.
Just over three years and a promotion to CEO later, I am privileged to have met, campaigned with, been inspired by, and plotted with many of those organisations. Together, we share a vision that people with rheumatic or MSK conditions live a high quality of life, free from pain, and with the best possible clinical outcomes from the treatment they receive.
Our recent work together includes:
- Improvement: BSR members on the JIA Learn quality improvement collaborative have proudly co-produced each of their service improvement projects with patients and families. The confidence and contacts to do this have come from the guidance and support of our partners at JIA, NRAS, Juvenile Arthritis Research, and Versus Arthritis. Their expertise has been invaluable and ensures each project is designed around the needs of patients and their families.
- Clinical audit: The award-winning National Early Inflammatory Arthritis Audit (NEIAA) patient panel continues to flourish. As we broaden the audit to capture rarer diseases, colleagues from RAIRDA are helping us ensure that our patient panel is representative.
- Campaigning: The patient and professional rheumatology community have been routinely failed by homecare medicines services. Our combined voices have ensured that policy makers are starting to take notice that patient safety is being jeopardised whilst those issues prevail.
- Guidelines: BSR guidelines proudly present the latest in scientific understanding about what works in the care and treatment of patients. That science is then augmented by the lived experiences we capture through the experts by experience who join our guideline development groups. Conscious that this can be daunting for anyone without a clinical background, patient organisations, like Sjogren’s UK and NASS have helped us create accessible and welcoming environments for all representatives.
- Best Practice: We love to celebrate the work of our BSR members and get a very high-profile opportunity to do so through our Best Practice Awards. But perhaps patients should get the final say on what ‘excellent’ really looks like. This year’s awards include a very highly regarded ‘patient choice’ award.
Likewise, it’s an honour to be asked to support patient organisations on their strategic projects and campaigning issues. We’ve been thrilled to join NASS in their excellent work with parliamentarians, and to celebrate the fabulous work being done through their Aspiring to Excellence programme. NRAS’ longstanding leadership on ensuring patients have access to the therapies they need (regardless of where they live) is something we keenly stand by and put our members’ names to.
These relationships were consolidated and celebrated at this year’s BSR Annual Conference, where our President, Jo Ledingham, and I were lucky enough to spend time chatting to and hatching plans with the patient organisations represented in the exhibition hall. In this general election year, we’re particularly keen to pool our advocacy and voice. Together we can achieve that vision of better lives and the best outcomes for those with rheumatic disease.
Sarah Campbell
BSR Chief Executive Officer