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From: TSS (216-119-134-128.ipset14.wt.net)
Subject: BAD BLOOD
Date: September 25, 2004 at 7:17 am PST

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Bad blood

Haemophiliac Robert James is one of the thousands of people who received a letter from the government warning them they may have been exposed to the degenerative brain condition Creutzfeldt-Jakob disease through blood transfusions. He explains what it is like to face the prospect of being infected with a third deadly disease

Friday September 24, 2004

My friend Paul had a greeting card with a picture of a support group for cattle. One cow says to the group "I'm not worried about mad cow disease", the group leader asks why and the cow replies, "because I'm a helicopter". Paul amended it to "because I'm a haemophiliac" and stuck it on the wall in his office. Paul has been dead eight years now - the Aids virus got him. So how did we go from making sick jokes about British blood in the mid-1990s to me collecting a letter when I got home from work telling me I had a higher risk of vCJD than all the eaters of cheap burgers do.

What is it about being told something you already know which still makes it hard to hear? I work in the NHS on promoting patient involvement and I already knew about the two vCJD infections from blood transfusions. I've always known my haemophilia treatment could carry diseases. It takes blood from thousands of people to make my treatment, giving me the opportunity of a disease from every one of them. I can hardly miss the fact that this treatment infected me with HIV, (I have to take my anti-HIV tablets in 20 minutes) and hepatitis C (don't even ask about the treatment for that). In the 70s some of the people that gave blood to make up my treatment had hepatitis C and in the 80s some had HIV. How many in the 90s had mad cow disease? Lots, a few, none?

The Department of Health commissioned a risk assessment of the chance of me and a few thousand others being infected with mad cow disease from our treatment. In fact I am so much of a nerd that I had already read the risk assessment when the letter notifying me came out. Although I am dubious about some of the assumptions in the assessment I did like the mathematical formula which I could use to calculate the risk of my own infection. Assuming it is actually possible to pass it on in this way, using their worst case scenario I have a more than 100% chance of being infected. That is very jolly. In their other case scenario I do a little better with about a one in seven chance. Then again it could all be rubbish and there is actually no chance of me getting it.

My experience of HIV at least lets me know what the preventive measures to stop possible transmission mean. Aside from the frankly bizarre proposal that I should not give blood, the other bit - about destroying equipment after invasive procedures (cutting, drilling or sticking things into me) - will just be a return to the medical pariah status I had with HIV all those years ago.

So what would I do about this as an NHS professional who works to improve the patient experience? It's hard to think how you could make this a good patient experience. I passionately believe that the most important part of patient involvement is not sitting on a committee, but being in control of what happens to your own body.

But of all people I should be good at this, I mean surely no one could have more practice than me at the "we think you may have got something really nasty from your treatment" conversation. Or does it work the other way, one infection is a tragedy, two is a farce and three just too much for anybody. Both seem true; I can laugh it off as nothing like as bad as being told I had the Aids virus in the mid-80s, and other times I feel I should just give up because if there is a God he or she really must have it in for me. Even if I miss this bug there is bound to be another in the next decade.

We have to stop repeating this cycle. In my job I talk about "clinical governance" the framework for continuously improving healthcare delivery. One of its simplest features is learning from your mistakes, trying to avoid making the same mistake and to change the system to pick up the problem earlier. Patient concerns can be a good early warning system to prevent future major problems.

If a hospital had caused the infection of a patient with vCJD from medical equipment it would be a "serious untoward incident" and be investigated. The main focus would be to ensure the same problems were not repeated on more patients. We have now had three occasions with the same treatment of suspecting that it had something lethal in it and on two occasions we were right. Yet there is no decision to investigate this and prevent me getting a fourth, fifth and sixth "nasty thing in my treatment". I could go on but I have to stop as it is time to take my HIV medication.
∑ Robert James is a patient consultant for the NHS Modernisation Agency

http://politics.guardian.co.uk/publicservices/story/0,11032,1312154,00.htmlTSS




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