Anton - Interview 28

Age at interview: 64

Brief Outline: Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

Background: Anton is an auditor. He is single. Ethnic background/nationality' Sri Lankan. (You can see more of Anton talking about his experiences of depression on our site on Mental health' ethnic minority experiences, Interview 13).

More about me...

Anton has a long history of depression, and has tried to commit suicide three times. Over time he has been finding it takes longer to recover from each period of depression. Neither antidepressants nor talking therapies have made much difference to him, but he is always hopeful that one day he will find a treatment that works.

 

Because of his experience, he takes part in as many trials as he can, often responding to newspaper adverts. He has friends who works in health care and likes to ask their advice about whether or not they think the trial looks as though it is well-designed and what they think the risks might be. He is wary of taking part in trials where the side effects may be substantial, but at the same time he is prepared to take some risks if it may help his condition. Anton is not keen on the idea of taking part in a placebo-controlled trial, however, because he would not want to end up taking something which had no possibility of improving his condition. His motivation for taking part is mainly to try to find something that will help him, and he feels he has also learnt a lot more about his condition by talking to the staff running trials. However, he is also happy to help for the potential future benefit of other people, especially if there is very low risk to himself. Even if a treatment does not work for him, the study may prove that it works for others and so will have been worthwhile. He has left his body to a medical school for the purposes of medical science.

 

Anton is so keen to be involved in trials that he says sometimes he has worked very hard to persuade trial staff to accept him even if he does not quite meet the eligibility criteria. If they say no first time, he will ask to be put on a reserve list, and will keep ringing back. He has also agreed to take part in trials involving talking therapy (which he does not really like very much) in the hope that the researchers will put him in contact with colleagues running drug trials. He does not feel it is right that people should be paid to take part in trials as he worries it will attract the wrong kind of people. He has become very interested in research and has become a member of the Consumer Research Advisory Group at the Institute of Psychiatry.

(You can see more of Anton talking about his experiences of depression on our site on Mental health' ethnic minority experiences, Interview 13).

 

Researchers could do more to make it easy for people to volunteer. It's off-putting when you ring...

After a clinical trial, or once they’ve done whatever tests, it’d be nice if they sent you a thank you letter, like a PR job, and then they ask your permission whether, your name can be put on a database, and whether you’d be interested in taking part in further trials with the researcher or with the institute. Then they’ve got a bank of people, so when they want to do something they could contact them and use them, than try to re-advertise and trying to recruit. Also another thing I find with some of these adverts which I saw one hospital down south of London, they advertised, they said, oh, they give an e-mail and they give a telephone number. When you ring them it goes to answer phone machine. I don’t know whether you were aware of this, a report was published a few years ago, a lot of people, even this day and age, don’t like to speak to an answer phone machine. They give up, right, or if the answer phone machine says, “Would you please”, well, “Leave your name and number. We will ring you back.” Or “This answer phone will be manned on such and such a day at such and such a time”. And then of course people will ring. Even sometimes when you leave messages on the answer phone machine they don’t bother to ring back, right? In some cases it would have been better at least if they say the criteria - not the full criteria - if they say, “Oh, this study is for under 60s” or “This study is for white males” or something, then people wouldn’t bother. They generally say, “Oh, do you suffer from heart problems? Then ring this”. They are wasting our time, Sometimes they advertise, and then you ring them up, and nothing happens. Then two months later they advertise again, and then you think, “Oh, they advertised.” And then you ring them up. I think they, being scientists and doctors they may not have been on courses about customer service [laughs], after sales service. It’d be useful if they’d been on this and then they’d think, “Oh yeah, let’s handle this approach”, yeah. 

Anton says nothing has helped his depression, and he is desperate to try anything. He hopes by...

Different psychiatrists gave me various antidepressants and at a certain stage they said to me, “Pharmacology doesn’t work for you, therefore we are discharging you. That was it. That was no consolation. I wanted to hold my job, I wanted to live. I still had ambition in my heart, I still want to go on.

 

As I was so desperate, I tried alternative remedies, acupuncture, acupressure, homeopathy, reflexology - you name it. But of course these alternative therapies they make exorbitant claims. And no proper clinical trials or any of these things. Although my doctor and others in the traditional medicine warned me about this, I thought, “One in a million chance it may work.” The only net result was none of them worked, only it lightened my wallet, end of the day, and that was it.

 

So one day when I was reading newspapers, I see this advert' “Clinical Trial, need volunteers”, and that is when I thought, “Well, nothing works. Let me even try this.”

Anton does not take no for an answer and will go to great lengths to persuade staff to include...

Sometimes they’ll say to me, “Oh, you’re over 60, you don’t come within our parameters”, then I say, “Oh, please, please, I’m suffering, please, please”. As they know me, I say, “Oh, please give it to me - nothing wrong just giving a tablet. Include me as the odd one out,” [laughs]. Like that, that personal contact helps.

 

Have you actually managed to persuade people?

 

Oh yeah, I go along on the charm offensive [laughs].

 

And they’ve said yes?

 

Oh, they’ve said yes. Even I’ve tried it on the telephone, when I ring up for trials, they’ll ask me, We want to ask you a few questions.” Then suddenly they said to me, “No, no, no, we are looking for people who are on insulin”. I said, “Oh, doctor, I’m really suffering. You’ll be a great help”. “Since 1988 I’m going through this. Well, please have a little compassion. Well, can I come and see you, at least, you know, at least get a bit of advice?” As soon as they see you, and I put on this sort of sad face [laughs], I said, “Oh, I’ve got to look after my mum” and all these things, and then they will relent, and then they’ll take me on [laughs].

 

Goodness knows what it does to their results [laughter].

 

Yeah, that’s right. I prick their conscience and, I may not come under the criteria, look at it like this.” My being an auditor and accountant, I said, “Just imagine, you give me the tablet and I get well, I’m no drain on health services. I can go back and work, I can contribute towards taxes, I could even come and help [laughs].

 

And sometimes have people said to you, “No, we’re still not giving you the drug because you’re not at the right age, or you’re not on insulin” or whatever?

 

Yeah. Well, then sometimes they categorically say no. Then I say to them, “In that case could you please put me on the reserve, because if you didn’t get enough participants then you can get in touch with me.” I never give up [laughs], I never give up. I remember in my younger days I used to work for a German multinational, one day when I was walking along the office the sales director called and said to me, “Are you free on such and such a day?” I said, “Yes, why?” “Because five of my salesman are going on this super sales course, and one of them can’t go because of such and such a reason. The course cost about a thousand quid. I don’t want to waste it, we won’t get the money. Although you’re an auditor, maybe you may learn a few things, and go on this course. It’s a one day course, it’s nice in the National Exhibition Centre in Birmingham, have a lovely meal, and have fun and come back.” So when I went to one of those courses, the lecturer or the tutor said to me, “When you go to sell something to somebody and if they said, ‘No, I don’t want it’, don’t take no for an answer. At that time, at that point in the situation they said no, try a different point, then they will say yes. So when even when they categorically say no, I then say, “Oh, please put me on your waiting list.” Then after a week I ring them up. I say, “Do you remember I spoke to you about it?” Then, then they might say, “Oh, yeah. We’ve got enough participants.” Sometimes I have a bit of luck, though, because there’s more than one person is involved in the research. Then when I ring them up I ask who is speaking, then if it was a different person, then I knew what was the critical question in– what do you call - rejecting me. Then I would say, “Oh, no I’m 59”, instead of 60.

Have you ever been found out?

In some cases where they send an application form and they’ll ask age, so instead of putting, 61 or 62, I would put my date of birth and if they are lazy to work it out, well, that is their problem. So later on they’ll find out, “I didn’t lie, I put my date of birth. Oh, I didn’t know.” I’ll play the innocent part [laughter].

FOOTNOTE: It is important to remember that there may not be a trial which is suitable for you. Some exclusion criteria may be there to protect your own safety; others may help to ensure that the trial results will be easier to interpret. If you want to know why you are not eligible for a trial to which you would like to contribute, ask the researchers to explain why you should not participate.

 

Anton has taken part in many trials comparing different treatments, but would never agree to be...

What kind of trials have you been in, what kind of treatments have they been comparing, can you remember?

 

Well, what it is normally, it’s some sort of a tablet. They said, “Well, we’ve got this new tablet, so we’ll try it out.” As mine is a mental problem, it’s normally done by a mental hospital, or an organisation like the Institute of Psychiatrists. They’ll advertise and I go along and sit for interview and they will say to me “Well, this is the tablet, these are the side effects.” Some will say, “No, you will be given this tablet.” Some will say, “No, it’s a blind study. You won’t know whether you get the actual tablet or the placebo.” I wasn’t very keen to take the placebo, because already I’m suffering. I don’t want the ruddy placebo. Then I shall tell them quite up front. “No, if you’re giving the real tablet I will take it, but if you’re going to give me the placebo, goodbye.” I’m only volunteering because I’m suffering. I’m not volunteering for the money.

 

So have you ever taken part in a trial where there’s a placebo?

 

Oh, whenever they told me I just walked out. I’ve only taken part in trials where they said they’re going to give me the actual medicine.

A small payment doesn't worry him, but if you pay too much it may attract the wrong people. When...

Have you been in a mixture of some trials that you’ve been paid for and some you haven’t?

 

Yeah, that’s right. Now my main thing for going for the trials is to alleviate my pain and suffering. I’m not bothered whether I get paid or not. Even when you get paid it’s about 25 quid or 50 quid, and nothing much. So that doesn’t bother me, but the only thing is that if they start paying a decent amount of money that may attract the wrong people. That I’m quite against it.

 

When it is a commercial organisation, then I will look for a fee, because they’re not a charity. I will tell them up front, “Well, you’re a commercial organisation, aren’t you? So why can’t you pay for my time and trouble?” Some commercial organisations, though, they try their luck.

 

They want to carry out a survey, and then, “Oh, before we call you for the trial, you’ve got to answer all these sort of questions.” Then after you’ve answered all the questions they said, “Sorry, you don’t qualify for this.” Then I thought, “Ah, they’ve done the market research on a mug like me”. So after about half a dozen enquiries like that, I get wise to it. Then I said, “Oh please take my name off your list, since I joined your company I haven’t earned a penny.” But then there’s some companies they’re quite genuine which I find, so then I’m on their list and when I look up the e-mail, then they will say, “Oh, we are conducting a trial on such and such a thing. Would you like to take part?” and then I go along, yeah. 

The end of a trial feels to him like a ‘non-event' – he has little rapport with the researchers...

What’s it like when it finishes? Does it feel strange when you’re no longer going and being looked after by the specialist clinic or?

 

Not really, though. Well, it’s like a non-event. You just go along. In most cases you’re with the researcher on an individual basis. It’s not something with a group of you become friends and look forward to meeting together with the researcher, he’s interested in research, and it’s, “Bye”. And later on even if you try to contact him, he’s not interested, it’s just like a non-event. It’s just like going to the GP and then coming off.