I don’t think they are aware of the, what goes into the trial, and how long it takes for it to, the product to be developed, and all the machinations of the, the lab work and everything like that. I mean it’s just, you know, they just think it’s I know I’m being generalistic now – but they, I think, I don’t think they believe what, they understand what goes on, in actual fact.

Do you think there’s more that we should be doing to educate people about trials and clinical research?

I think there could be lots that you could be doing, but I don’t know whether anybody would actually be that interested [laughs]. But you know what I mean? I mean, I’m interested because of my background, and I’m very passionate about all this sort of thing, but a friend of mine well, I mean, a lot of my friends wouldn’t even, you know, they would be more interested in horses or, you know, whatever they’re doing. I don’t think – I think it depends what makes your pump thump.

If I was experiencing a particular condition, is there anything I wouldn’t want to get involved in? o, there isn’t. If I’ve got the condition and I want it to be treated… mind you, I’d have to be absolutely convinced, like with an aneurysm, I’d have to be convinced that it was going to treat me. I wouldn’t want to just sort of sign up for it because, you know, it was going to pay me £20, or something stupid like that. I would want to – it’s the quality of the care that I would get that would be vital, and the background knowledge that I was going to be given that would be vitalespecially for aneurysm.

So for instance a placebo-controlled trial, how would you feel about being offered that, where you might be randomised to getting a placebo or you might get the treatment?

I wouldn’t want to do that – if it was so vital that I had the treatment. For – I can’t even think in what context I would, it would be okay to have a placebo rather than the actual product, if it was going to work. Because if I, even if I’d scratched myself, I wouldn’t want to have a placebo dressing and then someone else gets, you know, an all -singing all-dancing dressing that heals them in two days, or something like that, so.

I suppose the problem with trials is by definition you don’t know if the intervention is actually going to be any better than the placebo. But there’s something that worries you about
There is, yeah. Because, I think, of the fact that I’ve had this neurosurgery*, I’m thinking, you know, I wouldn’t want to be involved in anything that was potentially – I mean, okay, fine, if all the products are going to sort me out, or potentially going to sort me out – mind you, placebo might as well, mightn’t it, because it might just sort of, you know, the fact that you’re taking something or you’re sticking something somewhere might just be the thing that you need to get you through. I don’t know.

But for that to work you’ve got to believe it’s something that’s actually an intervention?

Yes, but as well I would – would I know the difference? I probably wouldn’t know the difference, if I wasn’t told it. I’d think, Oh this, you know, I’ve got to take it td [three times a day] or whatever, and that’s it, and I’ll do it. You know, I’m very regular with what I do, you know. I’m very sort of emphatic about times and all this sort of thing, and if I thought it was going to work I’d blooming take it.

* FOOTNOTE’ Jenny has recently had surgery for a cerebral aneurysm (an abnormal bulge in an artery in her brain).

My GP asked me to be in a trial because I was having major bleeding, absolutely awful, it was about every two weeks. I was bleeding so heavily and I was going through so much, so much sanitary protection it was unbelievable, and he just suggested that I went in for the trial, because he wanted to put me on mefenamic – or no, he wanted to give me options as to what I was going to have, you know. Either it was, I think it was three items. It was either the coil, another drug, and mefenamic acid, and I obviously got selected for the mefenamic acid. But that’s why I went in for the trial, because I was just in such, such pain with the, with the periods.

I was given a leaflet with the ECLIPSE* logo on the front and all the data about why they were doing the trial and what products were included in the trial, and everything about the trial. You know, it was all sort of randomised, and it wouldn’t, nothing would be, nothing would be associated with me personally. It would all be sort of like patient A, B or C, you know. I wouldn’t be defined as in my name or anything like that. And – but to be honest I would have been quite happy to do anything, because I was that desperate. You know, I would have been quite happy to just put my name to anything.

* ECLIPSE = Effectiveness and Cost effectiveness of Levonorgestrel containing Intrauterine system in Primary care against Standard treatment for MEnorrhagia

FOOTNOTE’ It is important to remember that you can have treatment anyway outside the trial and do not have to consent to a trial in order to be treated. Sometimes a new treatment will only be available as part of the trial, but in most cases there will be other treatments available.

What kind of follow up was there to check whether it was working, what the outcome was?

I think, and again it’s only vague memory, but I think I got a letter six months after I started taking the tablets, and they asked me about all the things, you know – was it, was it affecting my work? Was it affecting my… hobbies? My sex life? Lots of things about the, how it was, how it was affecting me, and… again I think I got another letter about six months later. Probably, yeah, it was probably about a year after the whole thing started, I thought, This is, you know, I’ve got – this can’t be what I’m going to be like for the rest of my life So I think then I went back to my GP and said, Look, I want something else, please

So was it making no difference to you at all, as far as you could tell?

don’t think it was. I think at first it did, but I don’t think it did after that. Probably for the first – but again it could be psychological. I could be thinking, Great, you know, I’ll be alright, I’ll be alrigh, and then it probably, maybe it didn’t after the first couple of months. It probably, the whole thing was justI don’t think it affected me at all.