A small study, but the results ring trueBMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7419.844 (Published 09 October 2003) Cite this as: BMJ 2003;327:844
- Robert Johnstone, president ()1
My own lifetime experience of chronic illness and my role as president of Arthritis and Rheumatism International, a trustee of the Long Term Medical Conditions Alliance, and vice chair of Disabled Living Centres Council indicate that my experience, although unusual, is highly relevant to the issues raised by Lewis and colleagues. I know that many patients wish to avoid drugs and would prefer lifestyle changes, and they want to minimise side effects from treatment. Thus, any preventive treatment would have to have minimal intrusion on quality of life for patients to pursue such a strategy. A well researched treatment that met these criteria and which increased patients' capacity to enjoy life and to manage their own condition would be uniquely valuable.
For nearly 48 years, since the age of 3, I have been pursuing a variety of treatments for severe juvenile rheumatoid arthritis. My role in this process has evolved from initially subservient compliance with my NHS general practitioner and consultant to a dominant partnership in my own health care. Rough calculations indicate that, between l956 and l976, I took 40 000 aspirin and 20-30 000 other pills (prednisolone, phenylbutazone, mepacrine, etc).
The trigger for my taking responsibility for my own body was through learning transcendental meditation while at university in 1973. Direct benefits in pain reduction, increased mobility, and blossoming self confidence coupled with encouragement from a friendly retired surgeon allowed me to gradually eliminate all drugs. My rheumatologist was furious: “I gave you permission to vary the dose, not stop altogether.” I changed consultant rather than try to work with a man who made no attempt to listen to my views and showed no understanding of my values.
Many years on, I have a warm relationship with two general practitioners who themselves meditate but only an impersonal annual visit to my consultant. My general practitioners, who are both qualified in maharishi vedic medicine, treat me as an equal, and we exchange views frankly and freely. I can take their advice on issues I raise, and they can suggest options without the slightest hint of offence if I decline. My use of maharishi ayurveda herbal preparations, lifestyle changes (diet, frequent swimming, etc), and regular meditation mean that I minimise the possibility of side effects and maximise my resistance to future problems.
My only real criticism of this paper by Lewis and colleagues is that such a small number of people were interviewed. Based on my own experience, I would like to amplify some points from their research.
True dialogue between patient and doctor is essential, and patients' preference and values must be respected
Patients want to make decisions to maximise their quality of life, and negotiated prescribing will yield better outcomes than imposed treatment
Doctors will tend to have different values from patients, but the imbalance of power in the doctor-patient relationship causes them to have undue influence. To counter this, I would recommend that greater emphasis be placed on listening skills in doctor training and that more opportunities for “expert patient” training be provided on a routine basis
People dislike unnecessary drug taking and would prefer lifestyle changes to “imperfect treatment.” (Is there such a thing as perfect treatment?) Unnecessary drug taking, which could include preventive treatment, can lead to the feeling of loss of control over health and reduce wellbeing, with subsequent negative impact on physical and mental health
There is an urgent need to research those who decline treatment, and to provide alternative options including complementary therapies as required
Finally, the cost of treatment is a huge issue. Cost is the biggest problem facing me, as I am living on a low income from incapacity benefit and income support. NHS treatments would be free, but herbal options and lifestyle choices cost money. Perhaps the NHS should fund well researched and patient friendly solutions such as transcendental meditation and maharishi ayurveda for those with chronic conditions.