© 2000 by Oxford University Press
Journal of the National Cancer Institute, Vol. 92, No. 17, 1373-1375,
September 6, 2000
© 2000 Oxford University Press
NEWS |
Patients’ Voices Grow Louder in Great Britain
This is the second in a two-part series.
The British Association of Cancer United Patients (BACUP) will celebrate its 15th anniversary in October with a tribute to its founder. Vicky Clement Jones, M.D., who died from cancer in 1987, is said to have done more than any other single individual in Britain to promote patient empowerment. She vowed to "kick cancer out of the closet" and to end "the conspiracy of silence" affecting cancer patients and their families and friends.
American readers might not understand just what an ambitious undertaking this was. British patients used to be treated like children who were "seen and not heard." They were denied clinical information as a matter of official policy; hospital notes were stamped "Not to be seen by the patient." Pharmacists were instructed not to tell patients what drugs they had been prescribed.
Thanks to campaigners like Jones, old-style British paternalism is now being phased out in Britain in the name of new-style American consumerism and political correctness. New models are emerging—the "informed patient," the "expert patient," and the "doctor–patient partnership."
CancerBACUP has quickly emerged as one of Europe’s most influential patient organizations. But people are asking how far Britain should follow the American model. "We’re still way behind the United States in patients advocating better treatment being available," said Jean Mossman, chief executive of CancerBACUP.
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"The information available from treatment trials from Physician Data Query has been available for some time in the United States, whereas even now they’re not available on a wide scale basis in the United Kingdom," she said. She wants Britain to go further down this particular road.
Funding Decisions
U.K. health economists have taken up this theme in the British Medical Journal, arguing that although it may be popular and politically correct to involve the public in health care priority setting, it may not necessarily be a good thing to involve it in rationing decisions.
David Torgerson, Ph.D., of the University of York, said that it is almost an article of faith among many U.K. economists that a publicly funded health service is more efficient than a free market service. One reason for this, he argued, is that consumers tend to show a preference for the most expensive procedure in the belief that it must be best.
"This phenomenon partly explains the reason that the United States spends a much greater proportion of its gross national product on health care compared with other, less market-oriented health care systems," he said. "By taking the health care purchasing decisions away from the consumer, the [British] National Health Service improves efficiency by allowing only those people with sufficient knowledge of health care to purchase effective medicine on behalf of patients."
But Tom Stuttaford, M.D., The Times medical columnist and, by virtue of his prostate cancer, a celebrated patient in his own right, believes that the public—and specifically the press—has a key role to play in the debate.
In The Expert Patient, a report published by the Association of the British Pharmaceutical Industry, he said, "I’ve always believed that informing patients was well done by the media. I’m not sure whether doctors would have moved down the line of informing patients if the media hadn’t done so. The more expert patients are, the better."
Stuttaford has played a prominent role in the long-running controversy over prostate-specific antigen testing. He maintains that opposition to it is "Treasury [financially] based."
"Long before I had carcinoma of the prostate, I felt that detection of it was a disgrace," he said. "If you have cancer of the prostate, it’s better to have it in virtually any other country but Britain. In one European survey of detection, only Slovenia and Estonia were worse than the United Kingdom."
With PSA, the (scientific) jury is still out—but more and more people endorse the idea that the PSA debate should be heard in public. Forty years ago, medicine in Britain was the most publicly silent and privately critical of professions, and the arguments would have been restricted to scientific meetings, learned journals, medical common rooms, and the medical Royal Colleges. Now, because of the media, it is the focus of a wide public debate—and perceived as a central part of the process of creating a new generation of informed or expert patients.
The debate became public in recognition that patients (as voters) have the ultimate political power. Although U.K. cancer patients have fared poorly in terms of health care resources (see News, Aug. 16, p. 1290), they should do better in the future. Extensive publicity about the state of the NHS—with unfavorable comparisons with Third World countries—has brought health funding to the top of the political agenda.
Mossman wants patients to have access to and information about what is the most appropriate treatment. This was Jones’ vision—along with information to help them cope better with disease, plan their lives, anticipate side effects and adhere to treatment. Simple, but in Britain in the 1980s, revolutionary.
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