Trial and errors

My psychiatrist suggested I participate in a clinical trial of Risperidone when it was first introduced in 2000. Not really knowing what to expect I agreed after a bit of pressure from my family.

At the time I was having a very acute phase and thought it might be worth the risk. The psychiatrist said it had been tested on other people before and that the researchers knew more about the drug than he did. Slightly reassured I agreed to take part.

Then I got to thinking about it more, away from the doctors and parents. I wasn’t sure about it but I did have a lot of faith in doctors. Then it hit me – when Clozapine was first introduced six people died after conditions it triggered destroyed their white blood cells. It still involves regularly testing people’s blood even now.

Could this happen to me? I decided that there were only a few cases of things going badly wrong, and anyway the severity of my symptoms had made my mind up for me.

When you go to a research unit (attached to a psychiatric hospital) you get a lift there and back. You even get a free cup of coffee when you arrive.

On the first visit there were no tests or trials. Instead there was a thorough talk about what was going to happen, what the trial was for and a consent form to take away.

Did the doctors inspire confidence? Some did, but I left with the words ringing in my ears “someone has to do it”, which I thought was true.

On my next visit I gave the doctors my signed forms, which I had completed without being absolutely certain. Then the initial tests began. It was predictable stuff like blood pressure, blood samples and other things I can’t now remember. In research gaining an opinion from a relevant expert only involves a phone call, but it normally takes a month! And controls on the research group meant everything had to be analysed in a laboratory in another country. So we had to come back in a week.

By this time I still hadn’t made my mind up fully but was prepared to go through with it nonetheless. Then right at the point I was going to undergo the trial, with the previous tests results in the clear, I was told that the trial first had to be randomised between Olanzapine and Risperidone. The result from a computer in Brussels selected Olanzapine which was not what we hoped for.

This involved another procedure with another week to think about it all.

To go on to be able to select the Risperidone I had to be referred to the medical ethics committee which took some time to decide. In the end we had to ring up to find what the result was only to discover that the professor in charge of the research had gone private and would not be conducting the trials within the NHS. Was I relieved? Just a little bit. Would I recommend to anyone?
Still not sure, but probably.

Mark Ellerby is a PhD student and uses mental health services