Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
The best guidance is simple reasoning
- Stefan Diez (27 August 2006)
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The Patient From Hell
- Ian S Gilfillan (29 August 2006)
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Re: The Patient From Hell
- Woody Caan (30 August 2006)
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Re: Our Special Girl
- Timothy P Senior, Andrew W Knight, GP & Consultant Medical Educator (1 September 2006)
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Patient's Journey - Our Special Little Girl
- Fiona Woollard (23 September 2006)
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Lesson learnt from “Our special girl” about the training of future doctors
- Padmini Venkataramani (14 October 2006)
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Stefan Diez, Consultant Neurologist 75365 Calw, Germany
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Once again this article tells us that patients with serious problems are no "customers" and that the German health care administration must tackle the problems of an extremly fragmentated health care system. Competing interests: None declared |
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Ian S Gilfillan, Cardiothoracic Surgeon Fremantle Hospital Western Australia 6160
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This article shows many similarities to the experience of Steve Schneider, and described in his recently published book "The Patient From Hell". Professor Schneider, a climate change scientist at Stanford University. eloquently describes the diagnosis and treatment of his mantle cell leukaemia. He questioned everything, and used his scientific background with great effect to influence his treating physicians. For example, he was offered only one white cell count to check for neutropoenia following his first cycle of chemotherapy. He questioned this, and when told of the parabolic curve that describes white cell depression following chemotherapy, his knowledge of mathematics led him to insist on three tests, the minimal datapoints required to describe such a curve. One of these additional tests discovered his white cell nadir, and led to hospitalisation for reverse barrier nursing. He argues strongly that evidence based medecine and the randomised controlled clinical trial has led to optimal treatment of only the median patient. Consequently, without individualised diagnosis and management, the majority of patients will be either under or over treated as a consequence. He certainly gives us all food for thought, as does Sandra Dunkelberg's experiences. Competing interests: None declared |
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Woody Caan, Professor of public health Anglia Ruskin University, Chelmsford CM1 1SQ, UK.
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Gilfillan [1] makes an excellent point about how indifference to 'individualised' management leads to poor management, for patients who do not correspond to the 'median'- for example those who do not conform to a clinician's routine expectations of their treatment. Dunkelberg's little girl [2] might have gone on forever in an aimless cycle of trial-and-error testing, if good practitioners had not accepted that they had not seen someone quite like her before, and demonstrated caution and humility in their practice. The director of public dialogue at the Association of Medical Research Charities, Sophie Petit-Zeman, has produced a vivid overview of these patient-centred issues in a UK setting, in 'Doctor, what's wrong?'.[3] In the section on Testing Treatments she concludes: 'Uncertainty is certainly unpopular, unfashionable.' (page 179). Of course, an individual child is not a population, nor a distribution. [1]Gilfillan IS. The patient from hell. BMJ Rapid response 29 August 2006. [2] Dunkelberg S. A patient's journey: our special girl. BMJ 2006; 333: 430-431. [3] Petit-Zeman S. Doctor, what's wrong? Making the NHS human again. London: Routledge, 2005. Competing interests: None declared |
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Timothy P Senior, GP & Medical Educator Parramatta, NSW 2150, Andrew W Knight, GP & Consultant Medical Educator
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Sir, We congratulate Sandra Dunkelberg on her article (1), which eloquently describes the experience of looking after her child who has a rare disease with as an as yet unknown diagnosis. Unfortunately, these experiences are all too common in those people and their families with rare disease. A survey by The European Organisation for Rare Diseases (Eurordis) in 2005 showed that 25% of people with one of eight rare diseases experienced delayed diagnosis.(2) 45% had their diagnosis communicated unsatisfactorily. They are able to list common problems experienced by people with diverse diagnoses. Eurordis estimate that 6-8% of people in Europe have a rare disease.(3) Anecdotally, we know that General Practitioners often see people with rare diseases (4), but there is no published information about the role of primary care in rare diseases. We believe that there is a need for a generic approach to people with rare disease that will avoid some of these problems commonly experienced by patients. An outline as to what a generic approach might look like has been published in the Medical Journal of Australia.(5) We would welcome comments on this approach and how the common problem of rare disease should be managed in general practice. It’s time for a discussion to start. References: (1) S Dunkelberg A patient's journey: our special girl BMJ 2006; 333: 430-431 (2) Eurordis. European Organisation for Rare Diseases. EurordisCare2: survey of diagnostic delays, 8 diseases, Europe. Available at: http://www.eurordis.org/article.php3?id_article=454 (accessed 30th August 2006). (3) Eurordis. European Organisation for Rare Diseases. What is a rare disease? Available at: http://www.eurordis.org/article.php3?id_article=252 (accessed 30th August 2006). (4) Phillips WR. Zebras on the common: rare conditions in family practice. J Am Board Fam Pract 2004; 17: 283-286. (5) AW Knight and TP Senior The Common problem of rare disease in general practice MJA 2006; 185 (2): 82-83 available at http://www.mja.com.au/public/issues/185_02_170706/kni10328_fm.html#1 Competing interests: None declared |
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Fiona Woollard, BA (Hons) Med Sec Dip YO24 1EP
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As someone who has had a similar experiences to that noted above and can identify with some of the respondents' view points as to diagnose or not to diagnose. The failure to diagnose can lead to complications if a diagnosis has not been found and the best way of achieving that with this complex case is through a genetic specialist. For example in hypocalcaemia - kidney problems and calcification from the failure to measure ionised calcium which can result in seizures. With a diagnosis, it is much easier to know what you are treating and what the likely prognosis is likely to be. Not to diagnose can also lead to unnecessary tests along with anxiety along with treatment or in my case considerably delayed treatment and diagnoses. Visiting different hospitals with a young child and requesting tests can also lead to "exaggerating symptoms to gain attention" along with accusations of Munchausen Syndrome by Proxy. The way a letter is worded can also lead to such a suspicion "this patient comes from a medical family and has had numerous tests". Part of the profile is the request for tests, changing hospitals, an interest in medicine or medically qualified!! www.msbp.com. A lack of a diagnosis does not help and it is very difficult to get allegations off once they are on the notes. Unfortunately, it does not make a difference if you come from a medical family or are a doctor (even high profile). Meeting the wrong paediatrician who has these views is, unfortunately, a danger and often the parent is unaware that it is happening particularly if you end up having a difference of opinion or come across more knowledgeable than they are or make them look a fool because you know they are wrong. When I eventually got a diagnosis for my son aged 2 and a half, I was wholly relieved to have finally found the answer for his numerous symptoms of his syndrome and found that it was "consistent with diagnosis". It was nothing like what was suggested originally by a paediatrician. I just wish I had had it earlier in order to implement appropriate therapy. The Internet can also be a danger as well of a benefit in supplying information as it can also lead you up the garden path. However, there are some particularly good sites for example www.rarediseases.org, and www.wrongdiagnosis.com which you may find particularly useful. As an individual who has the same genetic deletion and a considerable number of different problems (no congenital heart disease) because of delayed diagnoses but a completely spectrum to that of my son, sometimes it is best not to research too deeply into things and thereby over- investigate and become too knowledgeable. I leave the care these days to my consultants delivering my care and is a rare disease. My advice to you is to get a diagnosis even though you might not like it. After that have one paediatrician 'controlling' the case with the other consultants reporting to that consultant and only have tests which are necessary that they request, benchmark, monitor and treat. I stick to this philosphy these days and have one consultant who controls the case. Unfortunately, a paediatrician's view point is with the 'best interests of the child' and not with that of the parent. Best of luck. Competing interests: None declared |
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Padmini Venkataramani, Assoc. Prof. & HOD, Paediatrics & Child Health FMHS, UNIMAS, Lot 77, Section 22, Jalan Tun Ahmad Zaidi Adruce, 93150, Kuching, Sarawak, Malaysia
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I was saddened when I read the article, “A patient's journey: our special girl” by Dr Sandra Dunkelberg. I have had similar experiences taking my loved ones to the hospital and I am sure that many others, all over the world would have had too. This article has made it very clear that we should reexamine the training of medical students, even from their undergraduate years. Probably, while training doctors, not enough emphasis is given to communication skills, empathy, compassion, etc. in general. Perhaps, the emphasis is more on accumulation of a lot of factual knowledge about diseases and passing of numerous examinations. This results in churning out doctors, ill-equipped to handle patients and care-givers in a humane manner, in many parts of the world. In UNIMAS, communication skills are emphasized right from the first year, in our curriculum. We hope that our students would have good rapport with patients and their care-givers and will be humane in their approach, when they practice medicine after graduation. Competing interests: None declared |
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