So how to take that forward is a really hard thing, because you do produce a great deal of expertise and people with enthusiasm about what they want to do. Others have just had enough by the end of it I have to say they’re so exhausted by the whole process. They go, “I never want to do any more in the whole of my life.” But for some people it’s become, it’s become something. Because they’ve had their ways of thinking challenged, they want to continue challenging ways of thinking. So I think it’s a big responsibility which I had under-estimated when I first started, but I’m beginning to be more aware of now and will, in this next project, will be more aware of again – how to make sure there’s a way out for people that leaves them somewhere to go and doesn’t leave them with knowledge and no outlet.

What are the attitudes to involvement amongst your colleagues or do you think in the research world in general?

My colleagues it’s brilliant, because I work with colleagues who do this kind of work, so I’m very lucky. The research world in general I think is changing. Ten years ago I was definitely the mad woman on the block, definitely.

But I think, well, I think it’s changing. And I think people are recognising the point of doing it. I think there’s still a long way to go but I’m very positive for the future. I think we’ve kind of hit; we’re getting near the watershed. It’s been a long, hard road there it hasn’t been positive in the past. Anecdotal’, that was usually the thing oh it’s just anecdotal’ so you don’t want to get people’s anecdotes? People go home and give anecdotes about your surgery do you not want to hear that? If you listen to the anecdotal discussions about where I live, there is one hospital that you wouldn’t go to. Now don’t they want to know that? Don’t they want to know why people in our region go anywhere but not there? They’re really important things to know.

Somebody a long time ago wrote a paper called ‘Hot Gossip’ and I read it when I first started at the university about 1998 or sometime, and I lost the paper and I can’t remember who wrote it, but it was really good because it was saying these are the things that you want to listen to; listen to the hot gossip because it’s important. So why are we dismissing anecdotes? Now I’m not saying we should act on an anecdote what we should do is just some systematic enquiry. But collecting people’s stories is really how we do it. I just – yeah, but I think things are changing. I’m positive and I think the whole PPI initiative, even though I don’t think it started off, I don’t think they knew where they were going to go. I think they’ll get there; it’s been enormously, enormously helpful. All this stuff about having patient involvement, either in practice or, is enormously helpful. It’s just widening our horizons isn’t it?

Trusts and universities have to get better at understanding about reimbursement because even when you’ve got the money, if you’ve got a grant, you’ve got the money and you want to give them expenses if a person with a cognitive impairment, say short-term memory difficulties, has managed to get, for example, finally managed to get on a train after three times to try to come to a meeting. They would forget it was the day so we’d start to ring them up. Once they actually got to the train station and got talking to somebody and forgot to get on the train. They’ve managed to get a ticket, get on the train, come to a meeting, then I can’t say to them, “Can you fill in this form now? Can you give me your date of birth, your national insurance number? Then can you take it all home and then when you’ve got your ticket send it back to me and in a month and a half to two months’ time we might give you your money?” We can’t do that, we can’t do that. So Trusts and universities have to work out their organisational issues, their bureaucratic issues.

It’s all about building relationships, it absolutely is. You need to be able to build relationships; you need an enormous amount of enthusiasm for it. You need a great big thick skin to deal with organisations. You need to not worry about having big eggs on your forehead because you’ll have been knocking on brick walls with your forehead. It’s not an easy line but the skills of actually doing it with the people it’s about, it’s definitely relationships and it’s being able to facilitate something and taking yourself out of it. It’s really hard sometimes, especially the more you do it. So you’ve had experience of everybody learning before and you kind of want to make people get to this point because that’s where you’ve got to go, but remembering they can’t go any faster than they can.

But relationships are the core of it; if you haven’t got a good relationship it’s hard work and people will just be out the door. Yeah I don’t think there’s anything I can add to that. Recognising expertise; recognising their expertise. Sometimes recognising it for them, because they don’t even recognise it themselves. They’ve spent so long being a person with learning difficulties, knowing that they’re actually good researchers, knowing that they really can see right through to the issues – they don’t get it themselves. So I think being that person that also spots people’s expertise is important as well and it’s great, it’s great when people recognise that they can do this stuff and not only that, they’re really good at it. Or as they, as the men finally pointed out they were better at it than I was [laughs], which was true.

We used their conversations the way they understood things – to teach the next lot of men. So when we were talking about confidentiality and anonymity and that it wasn’t just not saying people’s names and we had all that discussion, then suddenly one of them said, “Oh I get it,” he said, “it’s like if we said, “Well the woman in the room with grey hair said.” They said And everybody would know it was you. And it was spot on, he’d got the concept now of anonymity/ confidentiality not being just not having your name; it was more than that and that lead us into some great discussions. Then we used that in the training because here was the woman with grey hair again and the men, and my colleague has beautiful dark black hair and so I was the one that stood out, so he’d got that.

And actually I learnt that in my Masters dissertation when I said about working with parents, because one parent said to me at one point, she said, “Why are you telling us all of this?” She said, “I don’t know want to know all of this, why are you telling us all of it?” And she was really angry with me actually, it was really upsetting. And I realised I was telling them all of it because I thought she needed to know and it would help her, but actually what I hadn’t taken into account, is where she was in her own knowing at that point. So I was trying to force-feed her, like we do with students sometimes. Force-feed them the information they need to know and they’ll be happy with it, but actually you cannot, you have to go at somebody’s pace. And I think that is very, why I really think it’s best to work with good colleagues I’ve been very lucky with my colleagues and kind of colleagues that will go, “Ooh what you did then? You started telling them rather than sitting back.” So having colleagues watch you who are used to facilitating. But it is, it’s that sitting on your hands business is so vital to it because people have to learn for themselves. That’s what it’s about participatory research isn’t me doing it; it’s them learning so that we can do it together so, yeah it sometimes you want it to go faster so you have to have a lot of sit-back.

But the other side of it is why are we doing research? I’ve always thought that I’m doing research to find something out that I didn’t know before. So if I start from my own knowledge on my own agenda, I’m only going to ask questions about what I know. So and on top of that we miss out the people whose lives are important in it. What do we know then? What have we learnt by doing our research? We’ve learnt what we know and what other people know about that, but not what the key issues are. So I think there is a massive methodological reason for doing participatory research. I’m not saying we should always do it I absolutely see the value of randomised trials. I actually think they could do a more participatory approach to setting the question very often, and then we’d say whether we need that or that, and there’s been some lovely research done by people who’ve done participatory research into setting question and changing the randomised control trial focus. But I see the benefit in all sorts of different types of research but, methodologically, I sit with participatory research because I think it is the most challenging form of research that gets below the common rhetoric and gets to things that you didn’t know before, and that’s what I want to do with research. And I also think, the third reason for doing it, it embeds the learning with the people that need to know. So if you have been in that process of researching with people and you are a staff member or a service user or a family member, you’ve been going through that challenging learning process as you’ve been researching. You can’t then not know, you can’t not know that, and it changes your thoughts and the ways you think about things and your practice.

So I think at first PPI was having somebody on your steering committee or your advisory group which was a recognition but it often doesn’t make a blind bit of difference. I mean if you’ve got one person on your steering committee who’s a service user, whatever kind of service user. Actually somebody with a learning disability would probably be a much stronger person, actually, because they tend to cut to the chase, but whatever your health need, if you’re fazed by a whole load of professionals who are, who know about research and are involved in the health service and you are faced with this research project and how are you going to be critical? How are you going to be critical?

And you can see the whole process is getting developed and then people saw that that was an issue so there was the next stage well maybe we’ll get together groups of patients. And each time I can see things developing further and further. Well this isn’t quite working why isn’t this working? And I can see things moving now nearer and nearer to participatory approaches where people have agency and have control in the whole process of research. So it becomes their research and they are very challenging about the process and you can see it in the INVOLVE literature now. I mean I think it’s, what you see now is much more moving towards a participatory approach. But PPI is definitely still seen, I think, by the vast majority of more traditional researchers, as having somebody on your steering group, or asking somebody if this is alright very basic consultation. And I still think that, when you listen to the discussions about PPI in Trusts, it’s about getting more people consented into randomised control trials. That’s the honest that’s how it’s translated.

But what I think is missing is the educational process of why we might do this and also, recognising that actually we are only experts in our own field. We are not experts in other people’s lives, however many times we see a person with learning difficulties or Parkinson’s disease or whatever, we are not expert in living that life and we have to engage with people to understand that. And actually even in research processes, I might think that, I’d like to think I’ve got some experience and some expertise in designing research, but I tell you, people with learning difficulties will go, “Well nobody would take any notice of that can we do it like this?” They come with a different set of knowledge that makes the design of our research much better as well as, telling us more about their lives. So I think the difference between PPI and participatory research is that in PPI people don’t actually really have agency as it’s conceptualised more broadly.

And I sit on, I sit on committees where I look at people’s research to see if it’s good enough for funding; and you see it and tagged on the front there’ll be this little bit, it’s like well we’ve talked to the people; we’ve talked to people about this and now we’re going to get on with our research. I think it’s enormously helpful having people patients and the public on funding bodies, committees that are looking at recommending projects for funding, because they spot that a mile off. But I think even that they’re not aware of the true depth that participatory research can reach. It’s still very new, there’s a lot of acceptance to be had of it. But that to me is the main difference PPI can be done without any agency. It can still be about co-opting people on; consultation in the kind of, the terms where you just say, “Is this right or is this wrong?” And my way of describing of it – is it’s the difference between if you’re vegetarian like I am you go and people say, “Well this is the vegetarian.” Sometimes they say this is the vegetarian option, there’s only one so, well then it’s not an option is it? But, “This is the vegetarian choice you can have this or this.” But actually I might not want either of it so, and it’s the same for all people with the menus isn’t it? You’re either given a menu or you can help devise the menu and that’s the difference. PPI, it can be being given the menu, you might have as much choice as you like but it might not be what you want. And participatory is about devising the menu and actually because there’s a group of you coming up with a menu that you would never have thought of on your own. Somebody says, “Oh well I really like this,” and you go, “Oh I’ve never heard of that.” So we can have that now, and we’ve broadened and broadened our horizons all of us we’ve learnt together and we come up with something that we didn’t know we could even have, and that to me is the joy of participatory research. It’s enormously, enormously time consuming and energy sapping, but if we’re going to do research just let’s do it properly.

So what is it that it adds – and I think the methodological side of it is really key to it – it’s not well articulated in the journal articles if you look through, it’s not – And even the ones that demonstrate some impact or articulate some impact it’s usually the impact on the participatory researchers not the methodological impact. I think we have to get much better at doing that. And the impact on the organisations that we work in, and the issue with that is that it’s longitudinal often; it doesn’t happen the research ends and it hasn’t happened there, it kind of trickles on. And we haven’t got good mechanisms for capturing it.

So I think that impact section on the grant funding form we’ve got to get better at articulating rationally expected impacts as well. What we might rationally expect from this. And we are getting better as we all become more experienced at doing it. We’re getting better in knowing what we might rationally expect, but of course the unexpected is always the most important bit – well usually, isn’t it? The unexpected thing that happens or you find out that’s the thing that’s like the bolt of lightning. And you’re not going to be able to say that’s going to be the impact of it. When we did the Inclusion research we wouldn’t say, “Well the impact is we want to change communication procedures.” We would never have thought of that in a million years but actually that has to be the impact because that was the outcome so. It’s hard, it’s not like a randomised control trial where it works or it doesn’t.

Measuring is a way of demonstrating an impact. Measuring gets used as that universal way, doesn’t it? You’ve got to measure your impact. Actually it’s one way of demonstrating impact and we have lots of others. So I’d like to eradicate the term measure’ as the universal and have it under a word like demonstrate’ which I think would be much more useful.

I’m not saying I want to get rid of all the other kinds of research not at all. I want recognition for the purpose of participatory research that people find through understanding that in the process of understanding. We have people still in Trusts – and I know this because we were asked by our, what was then the CLRN, to do a bit of work into what people in the region, what people with responsibility for research understood about PPI, even that was the thing.

There was an amazing range of knowledge, most of it was at the very basic end and it wasn’t that people weren’t interested, because sometimes people really struggled. We’d go to see people whose responsibility was for developing PPI in research in Trusts and you’d say, “Well what’s it for?” And they’d say, “Well we want to get more people involved in research; more people into trials de de de.” And then you’d say What else? Well, you’d struggle in the interview and in the end you’d say, “Well I’ll give you some examples. Do you ever do anything like that?” They go, “Cor, no, that’s really interesting. What else?” And you’d end up having a conversation with them and they’d be really interested in it [participation research]. They had not had any exposure to it so how do they know, how do they know? So that whole process of just enabling people to have discussions about what research is for, why you might do it, the different ways you can do it and including doing it in a participatory manner.

I think the outcome of working in that participatory way is massive and it’s massive on a number of levels. And for me, it starts off there’s a social justice element to it, there definitely is. I mean, for years people with learning difficulties were never asked about their own lives and they still aren’t very often. So we’d ask their mothers and their fathers or their doctors, but we never asked them and honestly it’s their lives why did we not do that? But actually you can see that perpetuated in other kinds of research. We don’t ask the people, children are the same. I mean it’s much better now in the last twenty years. Children everybody asks children what they think but years before they weren’t even asked. So there is a social justice, the voice of people because if your voice is never heard then decisions are made that don’t include your perspective and you become even more alienated. And the inclusive research agenda for people with learning disabilities has been enormously influential I think. But it’s not just people with learning difficulties and getting people’s voices heard, so there’s that whole social justice element of it. If you’re not heard you don’t have any power, so it’s a kind of power thing.