Infected by panic

CJD remains rare - but the CJD scare has claimed 24 new victims at a hospital in Middlesbrough.

Dr Michael Fitzpatrick

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‘An appalling incident…. Catastrophic errors…. Full extent of calamity confirmed.’ (1)

Another account of the use of poison gas to relieve the Moscow theatre siege? No, a report on events at Middlesbrough General Hospital in the UK Guardian. A death toll in hundreds or dozens? Not a single fatality. Serious injuries? Not one. Minor injuries? Well, none.

But 24 people were exposed to surgical instruments carrying a theoretical risk of contamination with Creuzfeldt-Jakob Disease (CJD). The risk is remote and possibly non-existent. These unfortunate people are now due to be visited by a team of specialist counsellors appointed by the hospital.

What happened in Middlesbrough to provoke such recourse to the thesaurus for synonyms of disaster? Back in July 2002 an elderly woman underwent a brain biopsy. Her diagnosis was unclear, but CJD was not suspected. However, when early tests failed to confirm a diagnosis, an alert clinician sent specimens to be tested for CJD, with a view to excluding this possibility.

To the surprise of all involved, the expert assessment was that a diagnosis of CJD (of the traditional ‘sporadic’ form, rather than the new ‘variant’ form linked to BSE (2)) was ‘probable’. In the two weeks that had passed, the surgical instruments used for the biopsy had been routinely sterilised and recycled, and had been used in operations on the unfortunate 24. (Though routine sterilisation methods are considered insufficient to destroy the notoriously robust prion particles thought to be responsible for the transmission of CJD, only five cases of infection via surgical instruments have been reported worldwide.)

According to the UK Department of Health, its procedures for preventing CJD transmission in hospitals are ‘crystal clear’. It appears that the problem that arose in Middlesbrough was that, because the diagnosis of CJD was not suspected, the CJD procedures were not followed.

The time-honoured hospital practice is that when diagnosis is uncertain, the first line of investigation is directed towards trying to confirm suspicions arising from the clinical features of the case. If this approach fails, as it did in this case, the next step is to pursue further investigations with a view to ruling out a list of improbable diagnoses.

The instruments used in the initial investigations were not withdrawn because, at that stage, CJD was not suspected. The ‘catastrophic error’ of the Middlesborough doctors was their failure to follow the CJD procedures before they suspected the diagnosis of CJD. What is ‘crystal clear’ in this case is the vision of hindsight.

The only way to satisfy the demands for caution thrown up by the Middlesbrough furore is to conduct all brain surgery with disposable instruments. Though the risk of transmission may be a notional one, this is the only reliable way completely to exclude it. This would not only be vastly expensive – as a result of this case, Middlesbrough Hospital has already disposed of instruments worth £90,000. It would also inevitably result in further delays in neurosurgical treatment – of the sort that have already occurred in ear, nose and throat surgery following the decision to exclude the notional risk of transmission associated with tonsillar tissue by resorting to disposable instruments.

Politicians and journalists will proclaim with rhetorical flourish that if one life is saved by such precautionary measures, this would justify the expense. But it is far more likely that lives will be lost by patients waiting even longer for surgical treatment than that anybody will die of CJD transmitted by surgical instruments.

The Middlesbrough case has provided a new opportunity for the assertion of rights in the sphere of healthcare. As a rule of thumb, we can be sure that if the assertion of a right confers no benefit on the person claiming it and imposes no obligation on the agency to which the demand is addressed, then it is likely to enjoy the enthusiastic support of politicians and the media, and perhaps of institutions of state at the national and international level.

According to the Department of Health, the Middlesbrough 24 have a right to the full disclosure of the facts of their notional risk: they have now been told that they probably have not acquired an infection that ‘can take up to 30 years to incubate’. Whether or not they have been infected, there is nothing they can do to reduce their risk of developing the disease, for which there is still no treatment. However, in the view of the Guardian journalist who broke the story, it is an outrage that their rights to this (utterly useless) information have been denied for some three months since their exposure.

The only consequence for the 24 of the disclosure of their notional risk of CJD is that they have been offered lifelong counselling: ‘[E]ach patient will have a named employee allocated to them to give them support for as long as necessary.’ The effect of this assertion of patient rights is to transform hitherto independent citizens into lifelong victims and clients of the therapeutic state. Their lives are much more likely to be blighted by the CJD panic than they are to suffer from the disease itself.

Whereas once the assertion of rights aimed at the extension of liberty, now it threatens to curtail it.

Dr Michael Fitzpatrick is the author of MMR and Autism, Routledge, 2004 (buy this book from Amazon (UK) or Amazon (USA)); and The Tyranny of Health: Doctors and the Regulation of Lifestyle, Routledge, 2000 (buy this book from Amazon UK or Amazon USA). He is also a contributor to Alternative Medicine: Should We Swallow It? Hodder Murray, 2002 (buy this book from Amazon (UK) or Amazon (USA)).

Read on:

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(1) Guardian, 30 October

(2) Since the first cases of variant CJD, the form of the disease believed to have been transmitted from cattle infected with BSE, were identified in 1995, the total number of cases has reached 128. The number of new cases recorded in 2002 up to 4 October is 13 (the total for 2001 was 20)

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