Well there often are research partners who are , and that is often used to mean companies or organisations which actually are, are partners in, in setting up the research, so that I think oh it would be a confusing term, partners.

No I’m not keen on that either. I did work for a local authority for a while in London as a marketing communications director and, you know, this whole partners business is very weird in a way. It’s kind of like a way of excluding people who are not partners so I’m not, not very comfortable with that.

It’s difficult to get the terminology right to find something that captures what you do so that other people could understand it but also makes you feel appropriately titled I suppose as well.

Well member is quite a good word.

Yeah and lay member or just member?

No, no just be the one member. I mean why, why does one have to go any further?

Theres attempts by researchers to sell themselves to the public and it’s one of the most difficult things I’ve found to do is that, and heres a wonderful opportunity to say it they love acronyms, oh they do, don’t they just love them? They create this research project and they think, ‘But what does this look like from outside?’ They use some terrible acronym usually accompanied by some disgusting little cartoon figure and think that people in stressed medical circumstances will really like these. They don’t, no; no they don’t absolutely horrible. Oh they’re all doing it now and you know I just find myself getting more and more po-faced when somebody shows me something, you know and they’d obviously spent a whole evening probably in the bath doing this, you know [both laugh]. I just want to say, “Don’t do it, just think up a nice title which is people can understand, if they can’t understand it don’t call it something like Burke or Mick or Horse or Hog or just; with a picture of the creature, just find a nice title that people will understand.”

To some extent people could only represent their, what their own situation has been. So rather than taking the nice person who’s going to understand the terms, and who can actually kind of go to the lessons and has time to do it and will, you know, will get their stuff back on time and knows how to use a computer, you need to use all the other people as well – all the other people, the non-contacts who don’t kind of, who refuse research, don’t turn up for things you need them there, you know, not people like me really. You know, I can be indignant on their behalf but it’d be much more useful if they would say, “No, were going to pay you ten pounds to tell us why you don’t want to do this” [laughs]. You know it would be far more, far more useful.

For example theres one piece of research I was looking at where they were looking at dental health in teenagers and about, you know, the difficulty of getting children to come to the dentist. And they were going to research this by asking people to come back every six weeks. I thought, ‘mm’ – which struck me as very weird because if you’re going to find anybody who did come back every six weeks they weren’t going to be the person with the dental health problem, as far as I could see, they’re going to be somebody who did what you told them. So all you need to say to them is, “Clean your teeth frequently,” and they’d be absolutely fine. So it’s that sort of thing, and you look at it and you think, ‘Well I must have missed something here, you know, are they going to put these people in chains and drag them back every six weeks?’

I think there is an effort made to respect, and there is a lot of lip service paid to it I mean I’m paid to attend meetings and kind of paid quite well and, as I said, I don’t think I’m good value for money because those aren’t particularly good meetings for me, and not for them either, they don’t benefit particularly from me, but we have parents who ring in to those meetings, who live in other parts of the country, don’t say a word all the way through and occasionally somebody will say, “Oh is that person still on the phone?” because they’ve forgotten and they’d all gone off to have lunch and left this person without actually saying. Or what’s happened to me I was on the phone to a meeting in Liverpool for a steering group, and somebody sat next to the telephone and ate a bag of crisps and I couldn’t hear a thing that was going on [laughs], there was terrible loud crackles. And theres a limit to how much your dignity will allow you to sit at home saying, “Is somebody eating crisps there?” Let alone say which page of the papers that you’re on. Or rustle the papers very loudly near the telephone so you couldn’t hear it even if they did tell you.

I’ve seen several people who are very good and who left because they weren’t actually involved. They thought that being on the committee they were going to get kind of research projects to look at and be involved in and quite reasonably they weren’t, probably because there weren’t any that anybody thought were suitable, and they have gone and I think it’s, you know it’s really bad for them in lots of ways to, to feel that they’re not, that they’re not being useful especially after doing training and going through various conferences and things. I, as I say, I just think there is an afterthought, a very worthy afterthought but an afterthought nonetheless and it’s and people are kind of quite easily disappointed if they feel that they aren’t actually participating in the way that they hoped to.

I think individuals’ experiences are very useful because a mass of people might not have had them and you might be asking people who haven’t had that type of experience so it’s kind of quite useful to have one person’s experience. As I was saying before you really need people going in all the time, I mean you really need people in that particular instance who have that type of cancer.

Often gender is excluded from research in terms of treatments and so on, and where treatments kind of can create scarring or can affect fertility, you know it can be kind of quite important, often even that is excluded. Sometimes age cohorts are very, very broad and you think, ‘Well, you know, how on earth can somebody of my age represent somebody of seventeen?’ you know, it’s just not the fact they’re over sixteen doesn’t make them have anything in common with somebody who’s nearly seventy, you know.

For the Medicines for Children Research Network which is looking at new research coming up, I attend those meetings, I’m not a very effective member with those meetings partly because most of the drugs that are being looked at relate to anaesthesia and they are very difficult to get any kind of hand on from the point of view of my understanding of them. I do feed it where I can but it’s I don’t feel that it’s terribly useful either to the committee or to me. However I struggle on.

And why is it you don’t feel that you’re very useful to them?

Well I think I’m not. I don’t think it’s just a feeling. I think, you know, I quite distinctly feel that I’m not useful to them most of the time partly because they are all very immersed in research, they know what’s going on around; if I was to stop and say, “I’m sorry I didn’t understand that,” I would be stopping them every kind of two and a half minutes and it would quickly become quite intolerable. There was a research, there was a project a little while ago about chairing and I did return on that because people on scientific committees aren’t very good at chairing. They tend not to sum up, they tend not to involve people, they tend not to explain to other people what others are talking about, and so it’s extremely difficult, especially if you’re involved by telephone, very difficult, because names aren’t used, what somebody’s role is often isn’t given, so it’s very, very hard.

And so do they make any effort to include you so sort of to reduce the jargon and introduce themselves or give you

Oh, they do to start with but it lapses very, very quickly.

There are various conferences which are run and I have been in previous years, I’ve been as the lay member for that committee to these conferences, but in fact they’re not really conferences in terms of conferring – the lay people conferring – they’re mainly the kind of very annoying workshops where you go in and somebody lectures you and then does a bit of training, you know, and you know you kind of feel once you’re 50 anyway, it feels a bit past that stage [laughs]. And again conferences they’re often, you know, you go along, you get the conference agenda at the last minute, it’s the same people talking, everybody congratulating everybody else, what a lovely job they’re doing, and you know, it’s all very nice and you get nice food and might get a nice night in a hotel somewhere, and it’s interesting to talk to people and I’m not saying they’re not useful for some people. Personally I just find them now, I just think well that’s not a conference really, you know, conferences used to be people talking to each other.

For the Medicines for Children Research Network which is looking at new research coming up, I attend those meetings, I’m not a very effective member with those meetings partly because most of the drugs that are being looked at relate to anaesthesia and they are very difficult to get any kind of hand on from the point of view of my understanding of them. I do feed it where I can but it’s I don’t feel that it’s terribly useful either to the committee or to me. However I struggle on.

And why is it you don’t feel that you’re very useful to them?

Well I think I’m not. I don’t think it’s just a feeling. I think, you know, I quite distinctly feel that I’m not useful to them most of the time partly because they are all very immersed in research, they know what’s going on around; if I was to stop and say, “I’m sorry I didn’t understand that,” I would be stopping them every kind of two and a half minutes and it would quickly become quite intolerable. There was a research, there was a project a little while ago about chairing and I did return on that because people on scientific committees aren’t very good at chairing. They tend not to sum up, they tend not to involve people, they tend not to explain to other people what others are talking about, and so it’s extremely difficult, especially if you’re involved by telephone, very difficult, because names aren’t used, what somebody’s role is often isn’t given, so it’s very, very hard.

And so do they make any effort to include you so sort of to reduce the jargon and introduce themselves or give you

Oh, they do to start with but it lapses very, very quickly.