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Rapid Responses: Rapid Responses published:
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Sharing information across language and cultural divides
- Jill F Pattenden, Sangeeta Chattoo (7 November 2008)
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Growth demands a temporary surrender of security.
- BM Hegde (9 November 2008)
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'Parents'! Trust your 'teenagers'!
- Mitzi A J Blennerhassett (10 November 2008)
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50 years on.
- Victor B Maxwell (10 November 2008)
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Growth demands changed thinking in the great and the good
- Mitzi AJ Blennerhassett (13 November 2008)
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Re: Growth demands a temporary surrender of security.
- Sumithra Jospeh Kundibellala (8 February 2009)
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Jill F Pattenden, Senior Research Fellow Dept of Health Sciences, University of York YO10 5DD, Sangeeta Chattoo
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We read with interest your editorial on patients being ready for partnership. We agree that regardless of the difficulties involved, it is vital to share information ‘across language and cultural divivides’. We would therefore like to bring to your attention some issues arising from the ‘Clinically directed enhanced services (DES) guidance for GMS contract 2008/09, delivering investment in general practice’, published in April 2008 by NHS employers and General Practitioners Committee. We understand that directions and amendments to the Statement of Financial Entitlements underpinning the DES are due to be published this month. Given our academic interest within the areas of heart failure and ethnicity, we feel that the contract raises a serious ethical issue, which we would like to share. It is interesting to note that practices already rewarded through QOF for maintaining a register of patients with heart failure (HF) will receive a further £35 for each patient (not recorded as intolerant or having a contraindication) treated with a beta-blocker. Whilst we recognise the potential benefits of reductions in morbidity and mortality conferred upon patients taking beta-blockers (1), and how heart failure nurses can help with initiation and up-titration of beta-blockers in clinically stable patients, the amount paid for this service sheds light on the value we place on administering medications. Hence, for an average practice with a list size of 10,000, expected to have 70 patients with a confirmed diagnosis of heart failure, this could bring in an extra £2,450. In contrast, it seems laughable that practices will be offered 5.6 pence per registered patient per year for recording ethnicity and first language of all patients on a practice list (including children and babies). Payment will be triggered only when the practice has recorded this data for 50% of its patients in the first year and 90% in the second year. Assuming this is a government priority enabling practices “to assess the needs of their population and address inequalities in access and health outcomes for BME patients”, it is a shame that the remuneration smacks of a tick box approach to addressing potential inequalities in health. Recording data on ethnicity can be crucial in identifying inequalities in health and differential health outcomes known to be associated with minority ethnic status of certain groups, and it may be considered essential to successfully target such disadvantaged groups in the 2010 Health Inequality targets. It is important to note that not only are we living in an increasingly ethnically diverse society, given the migration within the EU, but also 40 % of people of minority ethnic origin are born in the UK. This is going to be more of a challenge for notions of citizenship within the context of primary care, given the recent redistribution of resources and services related to long term, chronic conditions, such as heart failure, to be supported in community settings. We therefore need to focus on ethnicity as being intrinsic and an important measure of recording, rather than a token gesture to tick the right box that can only perpetuate rather than address issues of ethnicity and inequalities in health. Yours sincerely
(1) Dickstein K, Cohen-Solal A, Gerasimos F, McMurray JJV, Ponikowski P, Poole-Wilson PA et al. ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure. Eur Heart J 2008; 29:2388- 2442. Competing interests: None declared |
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BM Hegde, Editor in Chief, Journal of the Science of Healing Outcomes Mangalore-575 004. India
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Dear Fiona Godlee, That doctors must move from paternalism to partnership is an accepted fact and no longer a wishful thinking. We, in the profession, however, feel insecure in sharing our secrets with patients for fear of losing their confidence. This has some logic behind it. Our silent agenda of trying to medicalise the whole human kind, we feel, might get a severe blow by sharing our secrets with patients. Disease mongering depends on the medical claptrap. I feel time has come to temporarily surrender our security for the larger good in the long run. Take the example of the myth of diabetes spreading in the third world countries. Is there unequivocal evidence to that belief? To go back to 1916 when Joslin, in his first textbook on diabetes, wrote about the rising incidence of diabetes even those days in the west thus: “If diabetes should continue to increase in the next thirty years at the same rate statistics show it has increased in the last thirty years diabetes would rival tuberculosis as a cause of death, and if this rate progressed for another generation diabetes would be responsible for almost the entire mortality of the world. Such a rapid rate of increase is evidence of itself that a fallacy exists somewhere in the statistics. Convincing proof that this is the case is furnished by a comparison of the statistics for registration area of the US during the years 1911, 1912, and 1913 when the diabetic mortality was almost stationary.”(1) Similar views were expressed by John Malins nearly half a century later in 1968 in Birmingham in his book Clinical Diabetes Mellitus just after he retired after four decades of fecund experience. (2) What evidence is there to show that it is not the case with present statistics? In fact, Krishnaswami in Madras, India has shown that the present figures ARE flawed. (3) “The woman who developed the beginnings of modern descriptive statistics was neither a scientist nor a mathematician -- she was a nurse. Her name was Florence Nightingale. She planted the roots of modern nursing while she was inventing statistics, showing that the British Army was losing more soldiers to unsanitary hospital conditions than to enemy fire. Our ancestors, human and non human, have had hundreds of millions of years of biological and social (cultural) evolution for working on getting these things right." Let us not jump the gun using our faulty statistical cross sectional research. This kind of uncertainty obtains in every area of modern medical research. What do we share with our patients when they become our partners? Do we tell them that there is ample evidence to show that we are medicalising the whole population?(4) Do we tell them that we have been predicting the unpredictable future of patients? (5) Do we share with them the dismal outcomes of our interventional efforts? (7) (6) Do we tell them that when doctors went on strike time and again the society’s health improved?(8) Do we tell them that time has come to abandon our disease centric world view to that of the wellness centric view? (9) Do we share with them the ravages of the business called medicine?(10) Should we tell them that the greed of doctors’ and the drug lobby creates more problems than solving them? (11) While I am as enthusiastic as you are to partner with our patients, as a practising clinician, I have my reservations about being truly honest with our patients about the only certainty in medical science being uncertainty. What will then happen to the “faith” that the patient has imposed in you? We are in a catch twenty two situation here. Our growth demands that we surrender temporarily our security in this area for the common good of human kind to share with and care for our patients. Francis Peabody’s motto written on the walls of Mass General Hospital in 1927: “Patient care is caring for the patient.” Yours ever,
References: 1) Joslin EP. The treatment of Diabetes Mellitus. 1916. Lea & Fabigar, Philadelphia and New York 2) Malins J. Clinical Diabetes Mellitus. 1968. Eyre and Spottiswoode, London 3) Krishnaswami CV. Personal communications November 2008. 4) Moynihan R, Heath I, Henry D. Selling Sickness: the pharmaceutical industry and disease mongering. BMJ 2002; 324: 886-891. 5) Firth WJ. Chaos-doctors predicting the unpredictable. BMJ 1991; 303: 1565. 6) Starfield B. Is US medicine the best in the world? JAMA 2000; 284: 483- 485. 7) Scott, Richard and Selina Conn. "The Failure of Scientific Medicine: Davis Inlet as an Example of Sociopolitical Morbidity." Can .F Physician. 1987; 33: 1649-1653. 8) Siegel-Itzkovich J. Doctors’ strike in Israel may be good for health. BMJ 2000; 320: 1561. 9) Tinnetti M, Freid T. The end of the disease era. Am. J. Med. 2004; 116: 179-85 10) Dusen LV. Business called Medicine. Can. Med. Assoc. J 1997; 157: 1212. 11) Krumholz H. Cardiac interventions, outcomes, and accountability. New. Engl. J. Med. 1997; 336: 1522-23. Competing interests: None declared |
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Mitzi A J Blennerhassett, medical writer/author home YO62 4AQ
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Patients' medical records are often revealing and incorrect: my GP notes stated I'd had 2 children, when I had given birth to 4. One letter referred to me as 'this sad lady' - another as 'this attractive xx year old'. Personal remarks have no place in medical records. In hospital, I was told only that a bone scan revealed no evidence of cancer returning: a copy showed not only cervical spondylosis, but osteo- arthritis from C1 down. This information was empowering, since my pain had formerly been deemed 'psychosomatic'. It could also have had insurance implications. When a friend had bladder investigations, the hospital doctor discussed results and treatment plans. Only as the file was being closed at the end of the consultation did he mention perfunctorily that test results showed 'a solitary well-defined echogenic lesion of 18mm in the right lobe' and 'a simple cyst of 13cm in the right lobe of the liver'. It was not his area of interest... Horrified, the patient asked for a copy of the results. She researched on the internet and found she did not meet the criteria for any of the possible liver conditions found there. She spent a sleepless night and explained everything to her GP, who arranged a referral. She endured several days' acute stress. Her brother had died from liver cancer. It turned out the 13cm was actually 13mm - a typing error. If she had not queried the result with her GP she might have undergone further worry and unnecessary tests. Patients need lab test results. They need to know what these mean - what are the normal ranges (even if these vary) - and the implications. Lack of information during cancer treatments left me with nothing to rely on (see 'Nothing Personal: disturbing undercurrents in cancer care', Radcliffe Publishing Ltd) and caused more stress than the cancer. At risk of seeming a 'crank', I now ask for copies of all medical correspondence about me and any test results. If patients are to take increasing responsibility for their health they must be respected and treated as adults. Competing interests: None declared |
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Victor B Maxwell, Retired G.P. London NW4 1AE
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I find it extraordinary that it is necessary for you to have to write an Editorial such as the one in this week's B.M.J. 48 years ago,when I became a Principal in my own practice, Balint was already talking about the equal roles played by the Doctor, the Patient and the Illness and was stressing the need for communication between all three. Involving the patient at every step of the way was vital. This is what I was doing then and so were many of my colleagues particularly early members of the College. Copies of results and reports and even whole sections of text-books were regularly given to patients. It was gratifying to see how much they could understand and how much they valued being involved. The skill for the doctor was not to lecture and to know when to stop. Competing interests: None declared |
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Mitzi AJ Blennerhassett, medical writer/author home YO62 4AQ
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'What will then happen to the “faith” that the patient has imposed in you?' questions BM Hegde. Answer: Just as parents must 'let go' and trust their children to deal with challenges in the world, so must clinicians trust their patients to cope with information and knowledge. Honesty (and the only honesty is complete honesty) allows the patient to trust. Without this trust, they have nothing to rely on. And if that honesty means they discover that doctors are not omnipotent and have human failings, patients respect them all the more - for their honesty. 'The truth hurts but deceit hurts more' - Lesley Fallowfield. Ask the patients. Patients have 'grown up' and, thanks to 'patient partnership' and service user involvement, most of them are already aware of the limits to clinicians' abilities. We do not think less of them for having human shortcomings. We do not want clinicians to be 'gods' - held in respect only because they have all the information and power. Doctors who admit they do not know and cannot always heal (and admit to themselves their treatments sometmes cause harm, so can address needs) earn only patient respect - because they show respect for their patients. Others are seen as dinosaurs. In today's patients' eyes, doctors who have learned that complete openness causes less harm than even partial deceit are the 'great' men of medicine. Competing interests: None declared |
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Sumithra Jospeh Kundibellala, Doctor, Primary Helath unit, Noongyanganam 670541
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Sir I fully agree with Dr B M Hegde. Doctors have become greedy in India . Competing interests: None declared |
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