Patients in CJD blunder facing 20 years of dread

October 31, 2002 DAILY MAIL (London), by Beezy Marsh;Chris Brooke

TWENTY-FOUR hospital patients face up to 20 years of uncertainty and fear after being warned that they may have been infected with CJD because of an appalling hospital blunder.

They were operated on with surgical instruments previously used on a patient suffering from the distressing and fatal brain disease.

Infection with Creutzfeldt-Jakob Disease cannot be confirmed until the symptoms are clearly developed, a process which may not begin for 20 years.

As hospital managers broke the news of a possible death sentence to the unsuspecting patients, a public row broke out between the Department of Health and the hospital where the blunder took place, Middlesbrough General. The instruments at the centre of the case were used in a brain biopsy on a woman suspected of having a tumour.

Two weeks after that procedure, tests showed that the woman was actually suffering from CJD. During that fortnight, two dozen patients had had surgery using the instruments which should have been put in quarantine.

Experts say that the protein responsible for CJD cannot easily be destroyed by sterilising procedures.

In suspected cases, instruments must be taken out of the operating theatre - and destroyed once a CJD diagnosis is confirmed.

In this case, the blunder was further compounded because the hospital then mixed up the potentially infected instruments with other sets of operating theatre equipment - meaning more patients were exposed to danger.

Staff also failed to follow NHS rules to ensure instruments can easily be tracked back to a particular patient by barcoding or labelling them and recording the details. Last night Government Chief Medical Officer Professor Liam Donaldson launched an inquiry into how the blunder was allowed to happen, despite strict guidance issued in 1999.

Middlesbrough General was accused of an 'appalling incident' by the Health Department. However, yesterday the hospital seemed to be trying to clear itself of blame.

Dr Paul Lawler, medical director for South Tees Hospitals NHS Trust, said: 'A patient came to us with memory loss and was taken to the operating theatre for a brain biopsy on July 19.

'The pathologist was not sure what the diagnosis was going to be and wanted to rule out CJD. CJD at that time was not a strong possibility.' Dr Lawler told BBC Radio 4's the World at One, in a comment which appeared to try to absolve the hospital: 'One has to congratulate the pathologist for considering a diagnosis-which was off-the-wall.' The woman was found to be suffering 'sporadic' CJD - not the new variant CJD which has been linked to eating BSE-infected meat - but just as devastating.

Dr Lawler said the woman was immediately told of her condition but the trust was advised by the Department of Health CJD Unit to say nothing to the other patients until now - more than two months later.

The hospital said the chances of CJD being passed on to the 24 patients were extremely low.

But Clive Evers, spokesman for the CJD Support Network, said: 'There has been guidance in place well before the time of this incident.' Mike Stone, chief executive of the Patients' Association, added: 'It is alarming that patients' lives are being risked by such serious lapses of safety procedures when the dangers of CJD contamination are well known.'

Disease that defies sterilisation

CREUTZFELDT-JAKOB Disease destroys brain cells, leading to confusion, disability and eventually, death.

CJD has two forms. Classical or sporadic CJD, as first described in the 1920s, is rare - affecting only one person per million - with around 50 cases in Britain every year. Patients are usually middle-aged or older.

New variant CJD, the human form of mad cow disease, was discovered in 1996 and has been linked to eating BSE-infected beef.

Many victims were in their late teens or twenties. It is believed to be more infectious that sporadic CJD and is thought to have claimed 117 lives.

Government scientific advisers have faced the possibility that patients could be accidentally infected with the disease during surgery and issued guidance to hospitals three years ago to cut the risks.

The rogue protein responsible for CJD is difficult to destroy in hospital sterilising procedures. Government experts estimated that heavy washing and scrubbing followed by a spell in high pressure steam sterilisers should wipe out most traces of infectivity after ten cycles.

With sporadic CJD, only brain and some eye operations are believed to pose a risk of cross-infection.

New variant CJD may pose more of a risk and the rogue protein is believed to be present in the tonsils, lymph, spleen, spinal fluid and brain of those carrying the disease.

In cases where patients are exposed to CJD through surgery, only the first six patients treated are normally told.

In the Middlesbrough General Hospital case, 24 patients were told because the operating kit was split up and more widely used.

Under Department of Health guidelines, when a patient is suspected of having CJD, the instruments used should be carefully stored and labelled.

Once a diagnosis is confirmed, the instruments must be destroyed.

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