If you’re thinking about doing it, do it. Don’t hesitate get stuck in. You won’t regret it, just do one – do one and see how you feel afterwards. And if you’re currently doing it, you may have moments when you think, ‘This is tedious, this is boring, I don’t understand what they’ve written here; there is no – no-ones going to want to know what I’ve thought; no-ones going to read my comments’ – don’t believe that. Somebody somewhere will benefit from what you are doing, and you will never know who it was, and you will never know where they were, how they were suffering, what was going on, or how far down the line it was. But, somebody somewhere will benefit from those little marks that you make on that information sheet or whatever else. It is a worthwhile thing to do.

And how do you feel about not getting feedback on the comments that you’ve given or the suggestions you’ve made to researchers?

I wouldn’t say that it annoys me massively but, I do recognise it from my own research that that is a very, very important part of the process that isn’t happening. And I think, actually, that may well be one of the major parts of the process that keeps people participating’ essentially. Participating because you understand what’s going on is great, and then being encouraged to participate is great, and then being supported in your participation is great. Enjoying the participation; fantastic. But, you need to understand what it is that you’ve done with your participation, you need to know. It’s not patting somebody on the head but, it’s saying “Thank you for what you’ve done, that was really useful, more of the same would be great, and this is what we have changed in light of all the comments we received.” And even [if] it’s just generalised, even if it’s only something that’s been sent round as ‘We have received lots of comments, no names mentioned, these were the comments we received and this is what has changed. I think that is hugely important, yeah.

It’s a very, very interesting topic. I mean, I am – for my sins – also a governor at the hospital where I became a member. And you know, I’m into the third year of my term there as a governor. Every single one of the governors is white, probably middle class, mostly either: retired, or happen to have enough income that they don’t need to work, or don’t work through ill-health. They are not the normal run of the mill people. Myself and a friend of mine actually joined at the same time and we don’t get on very well with rest of the governors. Because were a little bit, sort of, loud and you know, probably about thirty years younger than most of them. And I’ve had periods of unemployment, which is a real shock. I mean how can you be unemployed?’ We can’t have an unemployed person being a governor, it just lets down the tone. I mean it’s – ooh it’s so annoying! But, I don’t think that there has ever been a single ethnic minority person on the governing body.

I’m not entirely – I mean, obviously it’s not something that we will discuss and I choose ethnicity because it is reasonably apparent – the more ethnicity you are. But, I don’t think that we necessarily have any people from different sexual orientations, I don’t know. [I] don’t know how, sort of, disabled status anybody is. Or, we have some people who have said that they have particular conditions but, theres been no concession in terms of handing out braille or hearing loop versions of meetings or minutes, or anything else like that. So there is an assumption that you are going to be white, middle class, probably middle aged to retirement age, independently wealthy, of a certain level of education, of a certain familiarity and comfortableness with seriously formal meetings where you say “Yes Chair, I would like to.” And I mean, I sit there in the meetings – and I am not used to having to raise my hand and address the Chair to ask a question of somebody who has just also raised their hand and made a point. I mean it’s not a comfortable atmosphere and I can imagine that if I was a, I don’t know, a seventeen year old young black man from one of the estates on the edge of the town – where we all know that there are seriously awful people living. If I was on those coming into that environment I would feel seriously uncomfortable. And I have wanted to do something to change this but, have actually – there is so much inertia in the system that it is bigger than, it’s a bigger job to make this more inclusive than one person can manage.

How you reach those communities? I don’t know, I really don’t know. I don’t actually – I think one of the problems is that they don’t even appear, certainly in the governing body; they don’t even appear to be communities that they feel that they need to get in touch with. And I think that is one of the problems, is that initial desire to be in touch. If you have a desire to be in touch with as wider possible representative group of communities within – I mean, you want people to represent your community, and if you have that desire you will find a way. If that desire isn’t there, then you’re quite happy with whoever turns up.

I mean, we need to be talking about who we want to include in our community, which is everybody who lives in our community. And it’s not ‘ism’ or ‘ist’ in order to talk, to go out and find people who have specific requirements and needs, to find out what they are and how they can be accommodated. But I’m just – I find it difficult because, a lot of people talk about this issue but, I’m not entirely sure that a lot of people do anything about this issue. I’m not in – I don’t know why but, I don’t whether there is a huge desire to do the amount of work that it needs in order to do this. Because, it does take time and effort, and it is difficult, and [needs] a lot of people. I mean, the other issue is that, of course, if you rock up to a small, I don’t know, black and ethnic minority group and say, “We want to talk to your members about” they’d turn around and say “Well don’t treat just us like an ethnic minority, I mean don’t treat us as special cases, we are part of your community, you shouldn’t be sort of coming round with your big highfaluting ideas and treat us as some kind of research subject.”

If you’re going to involve the public and patients in research they need to have a stake in designing research rather than being – I think the model at the moment, it’s moving slowly away from people being engaged, and told that they’re participants, and actually being research subjects or, I don’t know, proof readers, or whatever else. I think they are beginning to move from being very peripheral and very tick box, towards being actually properly engaged, which includes training; which includes, you know, meetings that aren’t about the research but, brings them together. Which includes being you know, being sent things between meetings to keep the interest and to keep the enthusiasm, which includes being told what they have done. But, maybe we need to move it on a little bit more to OK so you’ve been engaged, here are seventy five per cent of the research that we want to do, why don’t we sit down together and talk about the other twenty five, and what you think might be important to find out by doing all of these things. What do you, as PPI participants, co-researchers, what do you want to find out?

Do it but, appreciate us. We are human. We need tea, coffee, biscuits and a pat on the back occasionally. We need to know that what we are doing is appreciated and whether that is sending round, you know, an email saying, “Thank you very much for what you did, here are the comments that we had,” or whether it is having a meeting that starts off with tea and biscuits and a general chat about how wonderful it was that so many people were involved before moving onto something else. I think most of us would probably do – well most of us probably do, do an awful lot without any of that. But just, you know, every now and then having a pat on the back and a cup of tea would be nice, yeah [laughs]. Sorry.

I mean, I do think that is one thing if you get involved in one project there is a slight addiction to it. You get involved in one and then before you know it theres three, and you start to get training offered to you, and it would be nice to see that encouraged. So that people who get involved right at the start know that if they want to take it further; if they enjoy what they’re doing, there is somewhere that they can go afterwards and that’s part of the appreciation you know. It makes it feel like you’re appreciating the effort that people are putting in so, yeah.

It’s like reading the first chapter of a really good book and you just, you have to read the next chapter and then, before you know it, you’re half way through, and if somebody’s ripped out the last page then that’s the end of your life. And yeah, it does come to that kind of feeling. You just have – somebody tells you, “Weve got this research project going on,” and you know they don’t even have to mention about whether they want people to be involved. But, just hearing about somebody elses research and people are always so passionate about their research, and you do get drawn in by that passion and excitement and you want to find out; you want to help; you want to know; you want to be in there with your hands dirty finding out, yeah.

That was a nice analogy about the last page being ripped out of the book because, that’s sort of like when you’re not given the publications or the feedback or the outcomes from it.

Yeah, yeah that’s it; you never know what’s happened at the end, yeah. Actually that yeah, that is quite annoying and even, you know, I don’t actually think I’ve ever had anything come back to me in terms of published output from anything that I have done.

Actually yeah, I must chase up a few of those and see if they would, but.

And do you think that’s what you’ll do, you’ll contact them to say?

I think I will actually, having spoken to you now. I mean this has been very useful for me as well. I mean, I think it’s pretty obvious that I’m chronically involved in PPI [laughs], I couldn’t give it up if I was given treatment for it. And I think I – it’s given me a lot to think about, it really has; and a lot of assumptions that I had made about my own involvement which I think it might be useful to challenge as well. Yes, I think I will go back to all of those people I’ve worked with and all of those people who have sent me things to read and say, “I did this for you five years ago, what happened?” Because, it would be nice to find out yeah. Thank you, yeah [laughs].

I do feel very much at a crossroads at the moment, in that, I’ve done so much of this stuff in my own time as a volunteer, as a lay person. And I’m beginning to feel – this sounds silly I’m beginning to feel over qualified to be a lay person. I’m beginning to lose my lay perspective I think, on a lot of these issues. And it does worry me that I’m going to keep on putting myself forward for things, and sooner or later I’m actually not going to be, honestly, a lay person anymore. Which I don’t know if that’s a good thing or a bad thing, that I’m more informed any more. But, what I really want to do is move into working in this area. I mean it’s lovely doing it as a volunteer, it really is. You get such a buzz out of doing all of this and helping and, you know, what you say if people can prise apart sentences and find a nugget of sense in half of it what you say might be useful to somebody at some point but, that’s fantastic. That’s so exciting but, sooner or later you have to pay the milk bill or, you know, you have to put tyres on the car or something, and I really do need to get a job. So this is – I have never worked in anything that has excited me more than this, doing this as a volunteer. So if I could manage to get a job doing any of this, whether it be clinical trial administration or, you know, regular healthcare research or something like that. It would be brilliant but, I’m at that crossroads where I’ve only recently come to that kind of understanding of what I want to do. So, I haven’t been brave enough yet, to actually go and ask people whether I’ve got a hope in hell of doing any of it. But, I think going and talking to them at the CLAHRC is probably going to be on my list of things to do certainly, yes.

I mean that was one of the other things that was wonderful about the training; the NIHR sort of workshops for PPI involved people. It wasn’t just the workshops themselves, it wasn’t what we were learning. It was the fact that there was thirty or forty people there who are all working in isolation on little pockets you know somebody is doing sort of Motor Neurone research, and somebody is doing this, and somebody works with the local elderly, and so on and so forth. And we were all there together in the room at the same time; learning something together and lunchtime, I mean I don’t think any of us ate. I mean, there were so many different conversations going on left, right and centre; we were jibbering away to each other, and it was just nice to find out that there other people out there doing the same thing, and in many cases doing so much more. I mean there are some people who throw themselves into this, heart and soul and you know, it makes you feel bad that you’re not doing as much as they are. They’re just so enthusiastic about it and you think, ‘Well I thought I was enthusiastic, but you,’ and I think that is, that is something, maybe, that needs to be thought about. Is it you know, bringing people together; the sense of isolation that you mentioned when you are working on your own, just looking at, you know, this piece of paper making your own comments. It is very, very isolating and I think people do need to know. Not necessarily that there are other people working on the same thing but, just, we are all involved none of us are clinicians, none of us are researchers were all lay people. But, were all involved and that might help with the recruitment effort as well because, we could then turn that enthusiasm outwards and drag other people into it as well.

I think the problem is that you begin to learn the shortcuts and the shorthand that researchers use for things, which means that you’re not forcing clinicians and researchers to spell things out in full because, you know what they’re saying. So, you’re no longer a lay person who doesn’t understand any of this but, you’re not a clinician who does understand all of this, and you’re beginning to move up that spectrum and away from a position of needing everything to be spelled out for you. So, you’re no longer doing the job of defending the absolute lay person. You’re no longer the person on the bus who doesn’t know anything. You’re the person sitting in the hospital waiting room who has got a little bit of knowledge. So I can understand what you’re saying, and you can’t – it makes it more difficult to justify being a lay person on any kind of committee [coughs]. If you know that when you read this research proposal – if you know that shorthand here means something, you’re more likely to just gloss over that, rather than saying, “You need to explain in full what X Y and Z means.” If you were to read, for example, patient information sheets for any kind of, you know, even non-medical clinical trials; if you were to read any kind of patient information sheets, if you’re not reading them with absolute lay eyes you might be putting other people, not necessarily into danger but, into untruth.

And how do you feel about not getting feedback on the comments that you’ve given or the suggestions you’ve made to researchers?

I wouldn’t say that it annoys me massively but, I do recognise it from my own research that that is a very, very important part of the process that isn’t happening. And I think, actually, that may well be one of the major parts of the process that keeps people participating’ essentially. Participating because you understand what’s going on is great, and then being encouraged to participate is great, and then being supported in your participation is great. Enjoying the participation; fantastic. But, you need to understand what it is that you’ve done with your participation, you need to know. It’s not patting somebody on the head but, it’s saying “Thank you for what you’ve done, that was really useful, more of the same would be great, and this is what we have changed in light of all the comments we received.” And even [if] it’s just generalised, even if it’s only something that’s been sent round as ‘We have received lots of comments, no names mentioned, these were the comments we received and this is what has changed. I think that is hugely important, yeah.

I think a lot of it is because, I – well I’ve done so much, and all of it has been interesting and there is a real need, I suppose, to scratch that intellectual itch on occasion. If I can’t do something interesting in work then you know, I have so much free time and I want to be doing something interesting with some part of my life. But, there is also – I come back constantly to the day when I actually signed the patient information sheet to go on to the clinical trial, having spent months of being terrified, and having spent months getting people to explain things to me, and thinking if by being part of some of these projects’ and, if by’ sort of, you know, sticking my neck out and raising my hand and asking difficult questions as a governor of the directors, I can actually make things better, even for one person’ – ‘if one person gets Alemtuzumab who needs it, that’s brilliant. If one person ends up at the hospital where I’m a governor, not being you know, harmed by the medical treatment that they have, then that’s a good thing to have done. And you know, it’s a secret pleasure. It’s not something that I put on a t-shirt and walk down the street expecting people to fall at my feet and worship me for. It, it’s, I like – I might be quite a gabby person but, I’m quite a secret person, and I just like that secret contentment of knowing that you might have done some good. Because, you always know when you’ve done something bad but, you never quite understand when you might have done something good so, theres a secret contentment of yeah, yeah.

I think the area where I have the most problem about am I really lay anymore?’ is, it’s trying to read it as though I didn’t know anything about the subject or the medication or the condition or whatever else; and resisting the temptation to Google everything before you read it, or half way through reading it. So, it’s trying to see whether they are actually talking to real people, or whether they think they’re talking to post-grads, or whether they think they’re talking to junior doctors. And really seriously commenting on that, and also trying to get the truth out of them. I mean, I can remember for my own clinical trial that I went on, they had mentioned that blood tests had to be taken; for your own safety and also for their data. I had no idea what that would mean in terms of, practical real life impacting terms, and I think that – obviously they weren’t lying, they did say you would have to have a blood test every month.

But, I don’t think that they understood what that would mean for me in terms of having to go to my GP, making an appointment with the nurse, walking in and the nurse seeing me and saying “Oh god not you again!” Trying to find a vein that they could get blood out of, sending it off, going into work late because I’ve been there for a blood test and then wrapping it up and doing it all again the next month. I mean, theres a big difference between a sentence in the patient information sheet that says you must have a blood test with your GP every month and the reality of, ‘Oh my god, it’s you again,’ from the nurse. So, I mean that’s a more, possibly more subjective thing because, you can’t read through everything that they put into information sheet and say, “How do you think that’s going to happen?” Or “Why don’t you add something that – this is going to be really difficult, and we appreciate that. But, perhaps you could, if you don’t mind, do this.” There needs to be a certain formality in there just for people to realise the importance of it. But, I think it also needs to be something that is only given to a patient along with the conversation about how this is going to be interpreted in real life.