Well, for people taking part in trials, I think you do need to find someone who has the time to explain to you what it’s about. And you need to think about whether or not it’s going to, broadly speaking, be more valuable to the bigger, wider world than it is to you, or whether you’re doing it to help yourself, because the level of impact of side effects and, you know, what it actually does for you makes a bit of a difference. But I think in that you do have to find someone who’s willing to talk to you. And probably take it away from the arena if you have time, the actual research arena. And I don’t know whether a GP is any help, but I’d like to think that a GP could be revved up to take the sort of practical interest. I have to say my own, who is a wonderful guy, he backs off when it’s a question of talking about research.

 

And I don’t know who else you can go to, other than possibly people like yourselves at DIPEx* [healthtalkonline], and say, “Well, are there other consumers out there who I could talk to?” Because it would be quite nice to feel that you could get access to people with a bit of experience who can help you understand it. I mean, there are quite a lot of groups that you can track through the website and so on. I’ve not used them, so I don’t actually know whether or not they’d be helpful. But I certainly think that if you have time, talking about what it means and why it might be valuable is probably helpful, set in the context of how it’s going to impact on your life. I think it’s different if you’re ill than if you’re a carer. It really just is. And it’s obviously different if you’re ill and you’re hoping for a saviour to come along, because I think mostly I doubt whether trials actually do that for you. There are not very many which save your life. But that doesn’t necessarily mean they’re all awful or that they are bad things to be involved in.

 

*DIPEx is the name of the charity which runs the healthtalkonline website.