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Reflections on signing up your next of kin for a clinical trial

When you’re watching someone being ill, there are things that fuel your energy  and there are things that deplete it.

I’m going to add my two pennyworth on the AVERT trial which Terry mentioned in his last post (Staying Alive), which may be of interest to others who find themselves suddenly thrust into the role of Next Of Kin. Which up until then was a label I’d only ever worn on the back of my husband’s passport.

Terry was enrolled on the AVERT trial through my permission on the day he was admitted to hospital. It felt a bit like being asked for organ donation, but with the difference that it implied there was a good chance he’d survive; a good thing to know. Fuel!  We were talking about a treatment plan, a double blind trial, which might or might not help in his recovery. Less good – I’m naturally risk averse. Without the assurance that we could rescind permission at any time, I wouldn’t have agreed.

I very much dislike the cliched expression of ‘being a guinea pig’. Human beings are never guinea pigs, they are always human beings. If you are making a decision on behalf of your nearest and dearest, you’ve got to take their human strengths and foibles, their preferences and outlook, into account. Medicine is a social science, not a pure science, whatever people like to tell you.

If it had been drugs, not an early start to physio, I’m sure I’d have declined, because one thing I do know about my husband is that he can be sensitive to some medicines.

On the other hand, I was pretty sure that whatever physio regime he was put on, whether he was in the experimental group or the control group, he would be likely to over-do it. That’s who he is. (Some people undergo radical personality change after brain injury, but I had no reason to presume that was the case here.) This is someone who learnt to swim as little boy when some thugs pushed him off Chertsey Bridge. I knew him to be dogged and positive. So it felt like a decision he might make himself.

And surely, he would want something good to come out of this calamity.

In those first weeks while my partner lay in hospital, and particularly those first days, the whole world jangled. There was a kind of friction between public and private, because they were each running to a different rhythm. The world of work – at school – was a world of dates and deadlines and plans for the future; but my private life was lived in the immediate present, taking one day at a time. Terry’s care was in the hands of professionals; the absolute focus of my effort was to make sure I was on form for daily visits. My friends and family were a huge source of support, amongst them the colleagues I saw every day. Every positive interaction was the fuel that kept me going.  For my own good, I gravitated towards people who latched on to the good news, and mirrored it back to me.  And here’s the thing: being able to say ‘he’s taking part in a clinical trial’ not only made me feel good, you could see on people’s faces that it made them feel good too.

Sure enough, Terry agreed.

Anything that adds to motivation adds to vitality.

We all need to feel we’re doing something. Even if, to all intents and purposes. we’re not doing much at all. A clinical trial is a healthy way of finding purpose and meaning in a life that’s been de-railed.

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