The Bone and Joint Decade at the 4/5ths Mark

“I think the Decade can genuinely call itself a partnership project, a collaboration,” agrees Neil Betteridge, who grew up with juvenile arthritis. Betteridge has been advocating on behalf of his fellow service users for the past 20 years. Currently head of Arthritis Care in the United Kingdom, he has been advancing the BJD disability agenda through the U.K.’s NAN, the Arthritis and Musculoskeletal Alliance. “[The BJD] did feel, in the early days, much more doctor led, but I think everyone has woken up to the fact that we actually achieve more working side by side.” Policy makers, he points out, “don’t take arguments quite as seriously unless you can claim to be speaking directly for the people who use services.”

Different Countries, Different Issues

By conducting its work through national networks, the BJD has been able to balance country- and culture-specific initiatives with available resources and infrastructure. This year, with the conference to be held in India, Leong is especially excited about the opportunity for advocacy building among Asian patient groups. Fostering patient self-management in Asian cultures is challenging, she notes. There is an ethos about pain (you don’t complain) and parity for the expert patient (don’t question the doctor’s authority). “I grew up with the culture of not asking questions, even as a fourth-generation Chinese-Californian,” she says. “Had I continued with not asking questions, I would probably still be wheelchair bound.” (She was diagnosed with rheumatoid arthritis, Sjögren’s syndrome, and osteoporosis by the age of 18 and was wheelchair bound by age 26.) Today, Leong carries the message of effective patient–physician partnership to a range of consumer, industry, and clinical audiences.

The USBJD Experience

The United States BJD (USBJD) has been one of the most successful of the BJD’s NANs, according to BJD Communications Manager Sara Martin. The USBJD (www.usbjd.org) was initiated in 2002 with a proclamation from President George W. Bush and will run until 2011. Rheumatologists have been actively engaged with their colleagues in orthopedics, physical medicine, patient advocacy, and related disciplines to carry out the BJD mandate. “The USBJD is a big effort,” says Neal S. Birnbaum, MD, director of rheumatology at San Francisco’s California Pacific Medical Center, clinical professor of medicine at the University of California, San Francisco, and past ACR President. He served as ACR’s first representative to USBJD and has been impressed with the level of collegial working relationships within the organization. “We would certainly like to see this cooperation continue between the various disciplines, be it orthopedics, rheumatology, psychiatry, physical therapy, and patient groups, which have traditionally had their own agendas,” he says.