Twenty four patients at a Teeside hospital are being told they may have been infected with Creutzfeldt-Jakob Disease after a "appalling" safety lapse.

Middlesbrough General Hospital are informing the patients that they may have been exposed to "sporadic" CJD through instruments used on a woman diagnosed with the fatal brain disease.

The lapse was made after the equipment was not fully decontaminated after being used for a brain biopsy on 29 July.

South Tees NHS Trust medical doctor Dr Paul Lawler said the hospital had followed Department of Health Guidelines and warned, "It's possible it could happen again tommorow, in this hospital or in any other hospital.

What do you make of this safety lapse? Has it made you more wary of going to hospital? Do you trust the NHS?

We discussed the subject in our interactive forum for the Six O'Clock News with Alan Johnson of University Hospital NHS Trust, Birmingham.

Transcript

Manisha Tank:
Welcome to the Six Forum. An appalling lapse in safety at a Teeside hospital may have led to 24 patients being infected with Creutzfeldt-Jakob disease or CJD as some know it. It happened after patients at Middlesbrough General Hospital were exposed to instruments which had been used on a woman later diagnosed with the fatal brain disease.

It would be a surprise if this event hadn't made many of you wary of going to the hospital and thank you for your questions and comments about the subject. Here to address them is Mr Alan Johnson, Ear, Nose and Throat surgeon from University Hospital in Birmingham.

Thank you for being with us. First of, this story has spread some alarm amongst the population. In fact just today we've had a text message in from A Davies who asks: I've got a three year-old waiting to have her tonsils out and I've been told no one is being operated on because of CJD. Is that true?

Alan Johnson:
No, no that's not correct. The issue was addressed in association with tonsillectomy beginning in January 2001 where there was a move to using disposable instruments. That was a pilot for tonsillectomy because tonsillectomy is a commonly performed operation - in the UK there are about 80,000 tonsillectomies a year performed. It is an operation which is done mainly on children and so this is a particularly important group - or perceived as a particularly important group.

So the intention was to have disposal instruments for tonsillectomy. Obviously creating 80,000 sets of disposable instruments was quite a task and so there was delay in the initiation of disposable instruments. Problems then arose with their use and as a result in England, we've gone back to using reusable conventionally sterilised instruments, whereas in Scotland and Wales they're still using disposable instruments for tonsillectomy. But that's because they have their own health executives who've made those decisions.

Manisha Tank:
Monica Hale, US asks: How does sporadic CJD arise and what is vector if it is not through eating contaminated beef?

Tom White, UK: The strain of the illness involved is sporadic CJD, which is not linked to eating beef from a BSE-infected cow - so where does it come from?

Alan Johnson:
Well, CJD - the conventional form - it can be either sporadic, it can be familial and it can be caused by contamination of instruments - so called iatrogenic CJD - is a disease that occurs in the population in instances of about one in a million per year.

It's been with us for quite a long time. It was described certainly decades ago. It's a different disease but of the same type as variant CJD, which is really human BSE - or said to be. Certainly there's certainly quite strong evidence that variant CJD has only arisen since the BSE epidemic in cattle in Britain. So they are different disease and it is really quite unfortunate that they have the same name.

We don't really know where the sporadic or familial CJD comes from - it just occurs - but the disease pattern is different to variant CJD or human BSE.

Manisha Tank:
Jo Shepherd wrote in asking: Why would surgical equipment need to be quarantined? I thought all surgical equipment was sterilised to ensure that no infection could be passed on - this is deeply worrying to me.

There's a lot of confusion amongst many of our viewers about the type of protein that's involved with this particular form of CJD and the issues over sterilisation and quarantine and obviously an explanation is needed.

Alan Johnson:
Yes indeed. Prion diseases, of which CJD and variant CJD are members of groups of those diseases - they are probably transmitted by protein. Now all of sterilisation procedures currently used are really very effective against bacteria and viruses, but not protein as such and that's really why the conventional sterilisation procedure, as we use it now for surgical instruments of all types between all operations, are ineffective against prions.

Manisha Tank:
So of course this explains why quarantine was very important in this case. Ron Carter wrote in pointing out this his son died from variant CJD in February 2000. Commonsense, he says dictates that it's sensible in this type of surgery that you quarantine the suspected instruments until CJD or is not confirmed. So why do you think this didn't occur in this case?

Alan Johnson:
If the news items I've heard on this particular case are correct, the patient didn't exhibit symptoms suggestive of CJD and therefore there was no indication to quarantine the instruments in this patient. We certainly have generalised instruction that if you suspect CJD or variant CJD in a patient you don't use the instruments used on that patient on another patient until you've either confirmed the disease - in which case you'd incinerate the instruments - or confirm that they don't have the disease, in which case the instruments can go back into circulation.

Manisha Tank:
There was a case in this particular event that somebody did make the smart decision to go for some kind of testing and find out. But this brings us on to the guidelines. It was interesting that someone from the hospital involved said - this could happen again tomorrow - and this is perhaps is particularly alarming for many of us across the country.

Chris A, UK asks: So there was no breach of the guidelines apparently. If so, then my question is this: What kind of fool guidelines would they be if they didn't include the precaution of isolating the surgical tools used after any surgical intervention aimed at investigating possible neurological abnormalities?

Alan Johnson:
I think that's obviously a judgment for the people involved with the particular cases. But we do know that these diseases develop in otherwise previously healthy people.

I'm not sure why the tissue was sent for analysis in this particular case if the disease wasn't suspected. And you could perfectly well postulate that there are other neurological operations going on where the disease isn't suspected and the tissue isn't being sent - in which case they would be missed and we wouldn't know that.

Manisha Tank:
David M, UK: I'd like to know what are the risks in percentage terms to those exposed in this way to CJD?

It's very interesting to look at the way this story has been written up in some of the media. Some are suggesting that just exposure to the instruments is very dangerous - the exposure is to the risk of CJD. Can you explain how it works to us?

Alan Johnson:
Well you want a detailed reference on that, it can be obtained off the Department of Health website. There is a panel called the CJD incidence panel which has published an excellent document addressing this issue and their calculation for patients like the Middlesbrough patient who have had neurological operations is that the next six patients on whom those instruments are used are at serious risk of acquiring the disease if the instruments aren't taken out of circulation.

Now that's a different level of risk completely to, for instance, a patient incubating variant CJD who has their tonsils out and then the risk to the next patient after that patient of acquiring the disease is probably 10%. That's because neurological tissue has a much higher level of the pathological, the abnormal prion protein than tonsil tissue, for instance.

Manisha Tank:
Now some people are writing in about the timeframe involved in informing the 24 patients of their supposed exposure to CJD. Chris has written saying: What's the consensus as to whether these patients should have been told they were potentially exposed to CJD, given the fact that there's no method of detection or treatment you've effectively made, 24 people worry for the rest of their life. You never know if that worry itself could be more damaging.

Alan Johnson:
Yes, that's a very reasonable point. That's the precise issue which the CJD instruments panel considers in specific cases - that's what it was set up for. It's staffed by a whole range of people with different skills and chaired by Professor Michael Banner who's an ethicist. So I think the issues raised in this question are really very relevant.

Of course if you're told that you might get this disease and you never do, you might spend the rest of your life worrying that you're going to and every time you stumble you think you've got it. Are you better to know or not to know? I'm afraid I don't have the answer to that question. But I think it's a very difficult one and perhaps it's something that we should discuss in the public domain.

Manisha Tank:
Perhaps now we can just extend this debate about ethics and also what some people have written in about which is scaremongering. Jenny has written in saying: This is pure scaremongering. Instruments are used thousands of times over again. There's a far greater risk of infection being on a post-op ward than being in surgery itself. Stop giving the hospitals and their hardworking staff such a hard time. From your point of view, what is like at the bottom line?

Alan Johnson:
That's a very good question indeed. I think there's a couple of points to be made. I don't this is scaremongering. I think that with prion diseases there is a risk of transmitting the disease on surgical instruments using the current sterilisation techniques. With the best will in the world that risk exists. So it's not scaremongering in that respect.

With regard to acquiring hospital infections of other types while in hospital. Yes, particularly with MRSA, the killer bug, we know that patients acquire this antibiotic resistance to bacterium in hospital. But actually there is an essential difference and patients do die of MRSA infections but they are treatable. If you get variant CJD or CJD off surgical instruments, you don't survive - nobody survives these diseases, they are lethal. As your poor parent who wrote in with a child having died of CJD or variant CJD, will know that it's a very unpleasant death.

Manisha Tank:
Thank you so much for your knowledge and information on the subject and thanks for joining us from University Hospital in Birmingham.