And I’ll give you an example of something that I was working with, with a colleague today, where we have a big body of data on my condition, and she doesn’t have my condition. And although actually she has another chronic condition, which is not massively relevant to this, but occasionally comes up so that’s great. And sometimes where there’s an overlap we have some synergy that comes out of that. And what we’ve done is we are looking at the data together and discussing it. And I am giving her insights based on my knowledge of what it’s like to live with a condition in terms of I think that this might be a reason why this is happening, so let’s go down this road to see if I’m right. Whereas if I wasn’t there she would be completely in the dark or she might go off into some completely different assumption. So it’s refining the question with, so that your research is going in a sensible direction; it’s taking everything it possibly can into account. And interestingly one of the things that we were finding in our data was that so this is quantitative data and one of the things we thought at first we had a significant result to do with ethnic minorities, and we’re both white. And at that point I thought, ‘I am, we’ve got outside of my area of expertise in terms of involvement. If we are going to go any further with looking at this data and the possible reasons, or the possible explorations of why there’s a difference with these ethnic minorities we need someone who can give us that information and neither of us have got that information.

So that was public; that’s to me that was, it’s one of the best projects I’ve done in terms of public involvement because we are absolutely equal. We are absolutely better than the sum of our parts is that what I mean yes, the whole is better than the sum of our parts. But we’re also being reflexive about the fact that where we are not representative and where we need more help. As it turns out we were wrong about that bit of data so we don’t need to do it but, it’s, but if we had needed to take that further then we would definitely have had to rethink who we were involving in the project. Does that make sense?

I have had experience where I have been asked to co-author articles, at least in part because of my patient’ hat, but I also know that I wouldn’t know these researchers and wouldn’t be able to talk their language if I hadn’t gone and done my PhD. I did a PhD where I used my own disease experience to inform the design and data collection, so it wasn’t an ordinary sort of PhD. If I’d done an ordinary one, I would have been a normal researcher and I probably wouldn’t have been asked to co-author the things I’ve been asked. So it’s only because I’m wearing two hats that I’ve got these gigs co-authoring. I’ve got researcher value, and patient value at the same time. That can feel quite powerful. But it can also be really uncomfortable. If you want to use influence to change something, which hat do you pull out? I have sat in meetings where people have used kind of academic games to slightly intimidate or shuffle for power. For example they’ll name drop Prof So and So or they’ll be ever so careful to make sure you have a cup of tea but then talk jargon over your head. And I sit there and know that because I now know lots of quite important academics I can probably trump their mention of Professor So-and-So with a mention of Prof So-and-So AND his colleague, AND the editor who rejected their last paper. Or I can pull out academic jargon and mix it up with, say, disability rights jargon which they won’t be aware of, and mess with their heads. Or I can cut through all their games with something unanswerable, like, well I live with this every day and I can’t go home at the end of the research and forget about it, and what’s important to me is… I can also offer knowledge that they just don’t have, because the only things they know about my long term condition are the things they’ve learnt in textbooks, which cover about ten per cent of the things you actually need to know to live with it. So I can answer their practical questions in a way that is genuinely useful to them.

.But sometimes it feels really hard to have to keep thinking which hat is going to help? Will my patient hat piss this person off? Is my patient status actually relevant here, or shall I just present as a post-doctoral researcher? Do I keep being out about being a patient AND a user-researcher? If someone knows I have this incurable condition, that knowledge gives them power over me, too. They will be making decisions about my competency as a non-healthy person. There are times when I feel huge relief in being asked to use other skills than my disease related ones, even though I’m proud of the way I manage my condition and the research work I’ve done on it. Patients are getting more power but it does cost us something to keep offering up our disease experience in return.

What do you think the future is for PPI?

I don’t know actually. I was thinking about this the other day. I think the plug could be pulled any minute. I would I hope it’s not but it depresses me how few people really understand why they’re doing it and really get it and so I think it could quite easily. All it needs is a change of government that thinks actually, ‘Do you know what we’re not going to put money into research anymore. And it’s quite surprising that they did in the last budget. It’s one of the few things that wasn’t cut was health research. And it was one of the few things that they continued on with, you know, that no decision about me without me. But that’s just a bunch of politicians and they can change at any time and I’m not convinced that it’s rooted enough that it wouldn’t just wither. And it does worry me slightly that, career wise, and partly worries me slightly career wise that the plug might be pulled and so those special skills I have are not useful anymore. But also I kind of – I’d like to do some research which involved other people but I wasn’t the patient as well; that actually I was just an ordinary researcher and I needed to ask other people for their expertise because partly that’s just interesting and, partly because it’s hard work being the patient as well as the researcher because you’re doing two jobs.

What do you think the health research community needs to do in order to maintain or improve involvement?

Well they need to understand why they’re doing it? They need, they need, I think they also need to appreciate how poor some of the research is that they’re doing. It sounds to me as if, just talking to you about what other people have said and, reading the literature on it as well, they I think, there are, it’s clear that some people get it and some people don’t and it depends on whether the ones who get it are the ones in power and whether they can role model best practice and get people to understand why. And I think, and I actually think that there need to be more user-researchers because we can bridge the gap and I mean, you know, I’ve had some conversations today with people who I could see them get why. I saw somebody today get why and that was really interesting. And the reason that she did was because I showed her why the questions weren’t adequate, given this wealth of knowledge that I have about the condition and why, you know, it’s a kind of where are you going with, or well I wouldn’t start from here. And she got it and she realised that she could carry on down that line but it wouldn’t be good research and it wouldn’t actually answer the questions that she wanted, really wanted answered. And she needed to define more things and she needed to think about what she meant and she needed to understand that what was standard belief about the condition is really crude and really doesn’t work when you want to look at actual life.

And if we could have more of those conversations where somebody gets that ‘I get it’ light in their eye, it will embed better. So but I think that’s hard because the reason I was able to do that was because I was working with researchers and paid to be with researchers.

One of the things I find very difficult is that in some ways if you’re being the patient in this kind of situation then you’re almost there to be stroppy. You’re there to be challenging and if you’re not being challenging you’re kind of not doing your job. And that’s not of course entirely true.

But compared with my previous life when I was, didn’t even talk about my condition at work, it’s tougher. It’s a more; it’s confrontation in a weird way because you still don’t want to be confrontational. You don’t want to be an arse, but you are you know that if you let something slide you’re not doing your job. So there’s times when I’ve had to use quite personal examples to get my point across and that’s really exhausting.

I always say if the patient is the only person round the room who’s not being paid, and they’re doing the same amount of work as the rest of you, there’s a problem. And I’ve talked to people who kind of go, “Oh yeah we couldn’t possibly afford to pay all the patients and they should be doing it for altruistic reasons.” Are you doing it for altruistic reasons? If the research is worth doing, you should be doing it for altruistic reasons shouldn’t you? Do you really think that we eat nothing? We don’t have any Where do you think our money is coming from? And if you think that we all want to be doing it for free and we should be doing it for free, you’re presumably, your ideal patient is not only a naïve patient but also has got a Trust fund. So that’s only one kind of patient. So if you’re then going back to representation then how are you going to get those ones who actually aren’t? So I think there’s a, yeah, people need to think about when they’re exploiting people. And the other thing I always hear is people go, “Oh you know patients don’t really want to be paid.” It’s like, “No, I’m not sure you’ve asked them then.” Or maybe you’ve only asked retired people, which means you’ve only got one kind of patient again and that may be right. If you’re looking at issues that affect retired people, but you’re not are you? You’re looking at, you know, XY&Z.

And the other one that I think is classic is, “Oh we can’t pay people because some people if they; if we pay them then their benefits get stopped.” OK so that means you can’t pay anybody? And you can’t say to them, “I know we can’t pay you but is there anything else that we can give you and there’s all kinds of things but whether it’s in kind or not.” Also if that’s really a problem then, and yet the government wants us to do PPI, then what are you, as a research group doing about lobbying the government about that? You can’t just take it and not work with that. You need, you know, if the government wasn’t giving money to a certain kind of research you’d be lobbying them. So it’s basically those are excuses. And also I’d love to see how many of those people who use that excuse are going to the kind of people who are on benefits and asking them for help. No you’re not. You’re going to your retired mate from your bowls class or whatever [laughs].

But so I’ve been, I volunteered for a lot of PPI as a patient and I’m becoming increasingly cynical about it because I think that, well a lot of it, a lot of it is very badly done.

And the, one of the things that I’ve noticed is that I have been used by researchers/healthcare professionals to give their, what they want to say, more weight. So they’ll say, “Well we asked the patient and the patient said this.” And the thing about what I was talking about is the terms of the patient as a shield. It sometimes feels as if you’re being held up as kind of , to deflect the flak from the healthcare professional so you’re this extra powerful thing that gets rid of the , the objection. And to an extent that’s fine. I mean if my opinion agrees with that researcher then, that we get all we want then OK that’s just politics. But the interesting thing is that then I have had exactly the same experience with the same person who will then disagree with me on another issue and say, “Ah well you’re just one patient; I wonder what other patients think?” And again there’s potential, you know that’s worth looking at. How representative am I? But again I don’t think I’m there, I’m obviously not there to represent patients; if that’s what you want me there for you really need to have another rethink. I’m not representative. However I can give you insight. I can give you a perspective but in exactly the same way as you, the researcher doesn’t represent all researchers, I don’t represent all patients. And all I’m doing is giving you an insight from the other side of the fence. And if you don’t agree with me, then say you don’t agree with me. Don’t say, “But you’re just one person and you’re not representative,” because all that says is that you don’t really know why you’re doing this. And it’s patronising and it also underlines is I actually have the power here to decide whether I listen to you or not.

And of course you should, you know, I’m not saying that the patient voice always has to be listened to. I’m saying that before you start asking patients, work out what you’re going to do when they disagree and make that clear and say you know, “Sometimes we’re not going to agree. Sometimes all I want is to help me think outside the ordinary researcher box. I want to be able to think of different ways of doing things, but I may come to the conclusion that actually, for this research, the old way was the best, or I’m just comfortable with that, or whatever. Be upfront about it and don’t dismiss somebody for, you know, or actually don’t get someone involved in the first place that you don’t know why you’re asking. And that, if people, or why or what you’re going to do if they disagree. And I think if people ask that question before they’re invited in on their panels, PPI would improve in quality.

I was working in one place where they were doing a big piece of a massive study on my condition. And they didn’t ask me anything. And I was going to meetings with them and I was doing this and I kept on saying, you know. They kept on saying, “I don’t know, you know, we need to do PPI for this,” and I’d say, “OK hello, you could ask me.” And , and also their methodology was appalling and it could have been, it was a pointless piece of research; it was a waste of time and it could have been much better if they had just understood the condition better instead of just what they thought the condition was. And I found that very interesting and a part of me wanted to almost do a separate PhD on why they didn’t see me as a patient because that, I think that was why it was because I was presenting as a researcher in their eyes so I didn’t count because I would have been, I wouldn’t have been naïve enough, which is the other thing as well that people say, “I want my patients naïve.” Which is such a beautiful insight into what people think the patient is.

.I work in places where people are quite concerned about PPI and they, some of them do have long-term conditions or conditions that they are not bringing to the fore in their research, which is fine, that’s up to them. But quite often they then do this thing where they say, especially if they disagree with you, “Well we’re all patients.” And in other words that’s shorthand kind of for, “Well why should we listen to you when my voice is just as valuable as yours,” and to which case I would say, “OK great, yes it is. You tell me in what way it is valuable. You tell me what way your experience brings something extra to the table. But that means you’ve got to be out about your condition. It means you’ve got to be reflexive about your condition.” I am being all the time and I am out about it and that’s tough. And fighting people saying, “Oh you’re not objective, you’re not objective,” and having to say, “OK no, neither are you and this is why,” is tough and I sometimes I would like to pass as healthy.

So I would like people who kind of go oh we’re all patients. Fine, then you need to think about in what way you’re a patient and in what way you’re not; and in what way particularly. Somebody who occasionally goes to the GP is different from somebody who has a chronic condition and that’s not to say that your experience is less valuable; it depends what you’re researching.

At one point I was asked by one of the gatekeepers [for her PhD study] not to talk to the participants during observations. And I said, “Oh I wasn’t doing it,” and she said, “But you did at the, in the break.” And I thought that’s interesting because we were actually just chatting. We started off chatting about, you know the weather whatever and, because [our condition] is affected by everything and it effects everything, we segued into [talking about the condition].

Now I know that’s because that’s the way, that’s the nature of the disease and it would have been completely weird of me to say, “I’m sorry, now this is my research topic,” because [the disease] is not my research topic. My research topic is life with [the disease].

.There’s all kinds of other obstacles which you wouldn’t know if you weren’t a user researcher like, when I had to get R&D in ethics, I had to disclose my condition because for some reason, I don’t really understand to this day why, not because of reflexivity or because of it being a good thing, but because they wanted to make sure I was healthy because I was going to be on hospital premises. And then I said, “No I’m not healthy, this is why.” And so they delayed my ethics and R&D; they didn’t delay my ethics, it was the R&D people actually because it was the hospital thing. They delayed the R&D and so I had to chase them and said, “Can you explain why this hasn’t happened.” And they said, “Oh I don’t know, what have you; have you put anything; what have you put on the form?” And I thought to myself, ‘I know damn well why you’ve delayed this,’ and I said, “I put on the form my condition,” and they said, “Oh that’ll be why, yes.” And I just, and in the end the person on the other end of the phone who wasn’t a clinician, wasn’t an expert in my condition, was an admin person, asked me questions about it which were irrelevant and meaningless and then said, “OK that’s fine,” and signed it off.

Now that physically delayed my research, it really mightily annoyed me. It made me feel very small and crap and a second class citizen and, above all it was utterly needless. It wasn’t benefiting anybody

Certainly the questions they asked were not relevant, they weren’t useful. They could not have made a decision based on my answers or whether I should have been in the hospital or not; they couldn’t have done from my answers. Plus how did they know I wasn’t lying. Plus they weren’t a specialist and they weren’t even a clinician they did, had no knowledge of the condition at all apart from probably what they read in the Daily Mail. You know so what is the point of that? So there’s that kind of stuff.

There’s stuff like when I co-authored a paper and I was told to put my condition under conflicts of interest, which again makes me feel like a second class citizen and it makes you feel like, ‘Hang on a minute, why are you doing PPI again because you if you think this is a bad thing, you think my condition is making this research worse, then why are you asking me at all and if you don’t think that then what you’re just not thinking critically.

In my condition all the research that is done just keeps going down the same path again and again.

..And that’s why I’m then passionate about PPI because my entire motivation is, it makes the research better. I don’t really, you know if somebody wants to do a piece of research on something really, really specific about genetics and it would cure my condition and that’s fine, then I don’t need to analyse every little part of their research protocol. But I do need to decide whether they should be doing it at all because that makes it worthwhile whether we spend the money and, I do need to be involved in anything else where huge assumptions are being made or, and just deciding what to look at.

..To me it feels like PPI is at the stage that research, gender research, was at in the fifties where mostly men did the research and they often did research on women and they didn’t really get what was going on. So you get, it was almost like being in the Victorian age where, you know I don’t whether it’s actually true but there’s an apocryphal thing about an anthropologist who went to wherever it was they were studying, and they found that the native women had a period. They did the strange bleeding thing every twenty eight days. And he said, he literally wrote back and said, “This is very strange that this tribe does this; thank goodness our women don’t do this.” Because he’s this Victorian guy and he just hadn’t asked any women.

And that is kind of what it feels like. It’s just not getting it.

..So when I was doing the research where I was the participant and people were asking me questions, to take that kind of analogy a little bit further, it was a bit as if they’d worked out the women like imagine a whole bunch of men doing research on women and they’d worked out that women did have periods after all but they heard that it was every twenty eight days. So what they decided was important would be that everyone stuck to twenty eight days and obviously what you want as a woman is to make sure that it’s exactly twenty eight days, but if it’s not exactly, you’re not really a good patient, so we’ll do something to make that OK. And it, and it felt when I then got involved in research as a PPI person, as in shall we ask, let’s ask some patients about this. It felt as if people were coming to me and saying, “This is the research we’re doing; we’re going to do some research to make you have your period twenty eight days exactly apart, that’s a given. Can you look at the information sheet and tell us whether we should the word menstruation or period.” That is what it feels like. And it’s like I wanted to strangle you. Why are you asking me the wrong questions? What I actually would like you to research is some painkillers because I get really bad cramps. And actually that, oh yeah well maybe, maybe we’ll think about that later but first of all we’ve got to get your period to twenty-eight days because that’s the most important thing isn’t it? And that’s what it felt like in my condition, talking to researchers who didn’t get it. And I think, and I don’t know whether that’s the case for other conditions, it may well not be, I suspect that everyone’s different, but that’s the way it felt and that’s what frustrated me being a patient on the other side, and made me realise that it was worthwhile doing. To do PPI stuff.

So if you use healthcare services and the question is about people who occasionally use healthcare services then you’re appropriate, yes course you are. But I don’t want somebody who I don’t want, personally, my condition is not epilepsy. There’s no point in me being your patient representative if you’re doing some research on epilepsy I know nothing about epilepsy. So I’m not a patient as far as that goes and if I’m a researcher researching about the only thing I would bring that a completely healthy person won’t bring is, I do know what it’s like to be judged by doctors and I do know what it’s like to be continually going into the system. I do know what it’s like to be continually managing a condition and continually on medication and continually relying on somebody signing [prescriptions]. Those things are useful and valuable and if you’re capable of being reflective about what it is that you share with the group that you’re researching then great, that’s great. If you don’t, but yeah don’t think about what the category is; think about what you’re, the expertise that you’re bringing to the table. In the same way there’s no point in me saying, “Oh I’m doing a research project, I’d better have some advice off a researcher,” when I actually want someone who’s got stats expertise. I need to ask someone with stats expertise.

I’ve had a long term condition for a couple of decades more and only really, really relatively recently did I get involved in actually doing research on the condition myself, although I had been involved in other people’s research projects a lot because I live in a city where there’s a lot of research goes on and there’s teaching hospital. So it’s impossible to go in and get the care you need without somebody coming up and saying, “Would you like to sign this consent form; we’d like to do some research on you?” And the, and I noticed as I was going through this and helping with the research that a lot of the research questions were the kind of thing where I wanted to say, “Do you know what I wouldn’t start from here; you’re asking about the wrong thing; I don’t see why you’re asking this; why are you wasting your time researching this topic; why are you making these assumptions?” And that’s really what drove me to then start look into researching the condition myself because I knew that I wouldn’t make those. I’d be able to bring something to it that clearly was not happening with researchers who were healthy, who were looking into my condition.