28 Dec 2010 10:02
Every month or so I get a copy of Buddhadharma, a magazine that re-connects me with my spiritual values and helps me both feel good and refocus on doing something positive for society. This week it is a reminder of the spirit of Christmas and a refreshing source of support in the times when the Tuke Institute’s challenges form a seemingly impassable mountain. The current edition is about the historical oppression of women within Buddhism and how things have started to change since Buddhism developed a foothold in the West. This has allowed a less polluted form of religious practice to emerge from the tension between spiritual integrity and religious tradition, often returning to a more authentic spiritual practice that existed before religious ‘professionals’ and their vested interests developed.
It reminded me of the same problems in medicine between the professionalisation of Western male physicians, where they became the sole owners of the concept of medicine, and the fact that, for many thousands of years, medicine was defined instead by the needs of the ill person. It is no co-incidence that women were kept out of both religion and modern medicine for so long and that, in medicine, it took some strong women to re-introduce basic humanity into its practice, even though they had to call it by a different name: ‘nursing’. But as nursing became professionalised (though still subordinate to male medicine), it too became heartless: one only has to read Denton Welch’s “A Voice Through A Cloud” to remember what it used to be like with fierce and unkind nurses. While nursing has always been the most forward-looking of the medical professions and is far more in line today with what people need and require, medicine in all its forms struggles to remain humane as it becomes increasingly professionalised and distant from the reality of illness. Humane medicine is civilising and empathetic, it relates to the experience of illness, and thereby finds out what a particular person needs in order to get well. Inhumane medicine makes you sick, in all senses of the phrase. 

The balkanisation of medicine into ‘medicine proper’ (i.e., what Western physicians provide) and ‘ancillary’ services, such as nursing, is still one of the greatest failings of modern medicine; it is also one of the biggest obstacles to focusing effectively on the needs of the ill. As a person with chronic illness myself, I define ‘medicine’ as whatever I need to get and remain well, and this is sometimes quite distinct from anything the most caring physician can provide. It is a pity that such a simple truth has been marginalised by the vested interests of providers, interests that are so woven into the fabric of society that it takes ‘outsiders’ to show where the problems lie; ‘insiders’ can’t see it themselves, because they have no alternative perspective until they become so sick themselves they have to question what they know. The very fact that the ill are considered ‘outsiders’ in medicine identifies the core problem and if there is one over-arching rationale for the participation of ‘outsiders’ in medicine, it is to help ‘insiders’ remember their purpose. Otherwise, we get bureaucratic bean-counters causing multiple deaths (as at Stafford Hospital) or narcissistic clinicians causing multiple deaths (as at Bristol). Both have forgotten why they are there.

Over recent years, I have felt an increasing need to bridge this divide between providers and their purpose (patients)—not least because of the dreadful and inhumane ‘care’ I suffered myself as a patient in the NHS. It is the reason why I focused on getting other people like me—clinicians, scientists, and other providers who also have chronic illnesses themselves—to help find a way to bridge that divide through the work of the Tuke Institute; after all, we have to do this every day in our own lives and it helps us to not forget why we do what we do. Bridging this divide requires the active participation of patients, something that is already forcing medicine to change, but medical providers are fiercely resisting that change, protecting their turf from ‘outsiders’—often in the name of professionalism. Again, they have forgotten why their professions exist in the first place. Medical professionals need ‘outsiders’ to remember why they are there and, just as women have helped Buddhism regain its authentic spiritual values in religious practice, so patients can help medicine regain its authentic humane values in professional practice. Only a medical  professionalism imbued with a real understanding of illness will be able to help the ill get fully well.