My only request, I mean these days, you know when I was working it was slightly different, is that I’ve asked people to send me stuff in the post. They can send it to me email as well but I’m still the traditional old school you know, I like looking at paper and I like scribbling yeah. To me it’s much easier that using a document and then putting my words in, you know, as opposed to going this, you know, track changes and whatever. I find those maybe I’m of a different age and I’m not the computer kids that you guys are these days but, you know, I still prefer having that hard material in front of you because you can flip back. On a PC, yes you’ve got the document yeah, but you can’t flip back, you’ve got to scroll yeah.

And do you think that using computers is important for people who do PPI work? Do you think that would be important?

I think it’s a bit of both yeah. Yes I mean some people will find it easier you know. I mean attend our meetings where people have, don’t carry any papers. They open their iPad or whatever, the document comes out and they read it. I still find it, I’m not sure, I’m still trying to work out whether it’s being rude or not being interested yeah, and maybe that’s my generation yeah. I would still enjoy the flicking of the pages yeah, I would still say, “Well actually on page 25, paragraph three, you said this because you can sort of cross reference it. I don’t think you can do that on a computer yeah. But it takes all yeah. I’ve still, I mean I remember when I was working, I would still handwrite my letters, I would handwrite all my reports it’ll go to the admin, type it, correcting on a pc not a problem.

Right, well in the early stages of stroke recovery, because you’re aware that your speech is not as clear as it used to be, you become very self-aware and a bit tongue-tied. So face-to-face round a table is much more difficult than on a telephone, which itself is more difficult than emailing. So, I tried to structure, in the early days, as much writing as possible, so I had the document in front of me and I could take my time and organise it. Second thing after that, was sometimes the jobs involved interviews. So I would then try to persuade them that by phone was better than face-to-face because of my own position. So that’s the way I went about it. Now I’m quite happy to do, as in this case, you know, a structured face-to-face interview. So it’s a gradual process of not rushing it, but having goals in mind that you want to restore yourself to where you were or, you know, as near to that as you can get.

And in your experience have the groups you’ve worked with accommodated your needs or, you know, if you preferred to do something by phone but they would have preferred you to be in the meeting, would they have been OK with that?

Yeah, the best practise is that the researcher listens to the lay person, takes into account what they can do and don’t want to do, and uses, basically, what’s on offer. Rather than having a pre-conceived structure in which we fit the lay people, it’s wed like to hear from you, what’s the best way to do it? So, and that’s just my experience of course, others may not have such a satisfactory experience, but I’ve been very pleased with the way it’s been handled.

Well, given that I do an increasing amount of PPI work, I do sometimes follow up and then counter with reflections on the day or an email to check that the messages that I wanted them to take home have really gone home by putting it in writing. And, because I can edit it before I send it, I can be entirely happy that it’s truly me. And it gives them the opportunity to painlessly forward it to other people, people who they think might take an interest or to file it for future reference or something. And I think quite carefully about how to make the point really clear in a teachery sort of way by using bold and colour and so forth.

And yes the stuff I do with the stroke research network sometimes you’ll have an email conversation backwards and forwards with somebody and then clearly that person has had a verbal or email conversation with somebody else and then you’ll get an independent email that comes round and you get another conversation going.

And how do you feel about the fact that you might be passed around like that and other people might be able to access you?

Oh no I like it; I like the fact that it has the written dimensions so that there is much less scope for any sort of ambiguity. I mean I suppose people could be cutting and pasting bits and introducing aspects that were not where the message was really intended but broadly I think it’s safer than a sort of a Chinese Whispers’ thing where one person tells the next person and the next person thinks, ‘Oh well yes, it might be useful for something else,’ but the message gets twisted when its told one person to another. Whereas if you’ve emailed something it tends to get passed on in its entirety or at least paragraphs can be cropped and passed on. So I find it a very useful tool for moving things along. And other people like it and it cuts down on their work, which is also why I do it. So to be helpful you have to put yourself out to see something from another person’s perspective to make things go more smoothly.

So actually it’s really good because they organise your travel. And I think they’re really important, that you actually have face-to-face meetings because you make a connection with a committee. I think were really lucky in rheumatology and we have an amazing Chair called [name] and he has always endeavoured to make sure that the consumer voice is valued and heard. I think most importantly that it’s viewed as important and the meetings connect everybody together. We normally go down, have a pre-meeting. It’s not a fancy hotel or anything else, very basic hotel; I think it’s part of the [university name]. And then well have dinner together; where well all just share a table and chat, find out a bit more about everybody just socially, and then you’ll have your full on meeting the next day. So yeah, I think they’re really valuable. And then once a month well have a teleconference which will last an hour and a half and well all dial in, but because you’ve met the people it’s much nicer and easier to do that.

And what’s it like taking part in teleconferences?

Well now it’s fine. At the first bit it’s a bit strange but you actually get used to it and, as I said, because you’ve met the people it’s much nicer and I’d always advocate that if you can have a face-to-face meeting first in any group and then you can dial in and then. I actually run a teleconference for a new parent group that’s just formed as part of the British Society of Paediatric and Adolescent Rheumatology. So we actually have teleconferences probably once every six weeks and for those, most of us had met but a few people couldn’t make the meeting, but again what I ask people to do there is just to say their name first so people know who’s talking because if theres twelve to fifteen of you on a call it’s really hard to know who’s actually speaking at first. And sometimes you just have to interject and you might be, you’ve no signals or you’ve no signs of people are trying to also speak. So you therefore just need to just interrupt or just speak whenever you get a pause. Difficult, probably harder than a face-to-face but time, it’s a better use of time and it doesn’t cost anything as opposed to everybody travelling.

Well my background is as a carer of a child with a chronic illness. And the very first involvement in research I had was through the hospice where he died who did some work on bereavement. And following that, one of those researchers asked me to be on the steering committee for another research project they did. That was really only a very minor involvement, just reviewing a few documents and not really very deeply involved in the research, just commenting on drafts and things like that.

I had sort of expected to get more involved. After my son died I went back to university and thought I was going to get involved in health service. But frankly I was just a bit too sore to really feel I could contribute very well to that. It, it was all a bit, a bit too confronting and I thought working with other people who were going through traumas probably wasn’t a good idea at that time.

So I stepped back from that and there was a sort of gap in, in my involvement when I went and worked in community research and community empowerment work. So just stepping away from health, but still about, you know, getting involved in things.

And then I was sent an email that a colleague of mine had got through a disablement charity that she was involved in which was asking for lay reviewers for research proposals for National Institute for Health Research and also for funding panel member for Research for Patient Benefit Programme, and she said, This looks like exactly your cup of tea. And I thought, yeah, that’s looks like something that’s really interesting. It’s looking at the area that I already wanted to work in, and it’s a bit more stepped back. It’s not as sort of personal and face-to-face as some of the other stuff that I was looking at doing. So I thought that sounds like a good way of, of contributing really, and using the knowledge that I’ve got from being a carer.

Well my own experience is that the service user participation in the Stroke Research Network is highly valued. That the researchers in the Stroke community do take account of the involvement of lay members. Indeed the chair of my Clinical Skills Group is adamant that involvement is a very high priority and I heard her speak at the recent Stroke Forum to potential researchers about the importance of engaging with the Stroke patient community or the public in first of all identifying the research priorities, identifying the content and the way that the research might be organised so that the views of the lay members is taken into account when designing a research study, and then engagement with them right the way through. And not simply seeing them as data and people who will enable the person to receive academic credit, and really looking at the real meaning of the research and that is to improve the life of people who have experienced stroke, and to enable care to be given in a much more effective and efficient manner.

Yes I think researchers, well I think the message has got to most people. I think if you want lay input, ask for it. And sometimes if you don’t get an instant response, you know, send another request because sometimes it’s just that people are busy or, you know, it’s on the to do list and it hasn’t risen it’s not because theres no interest. And value those people, make them feel welcome. You know, some professionals are extremely good at chairing meetings where lay people are involved and some are not, some are appalling. And some of the people that you would feel should be really good, are not good. Good chairing of whether it’s a meeting or whether it’s a teleconference, you need to actually acknowledge everybody who’s taking part and to make sure everybody does take part. That’s not to push people when they’re not happy to be pushed but just introducing, you know, and just asking for, you know, “Is this something you’d like to comment on?” Or, “Well actually this is something that we need a lay view, what do you think about this?” And if they don’t come back right away then say, “Well could you think about that and then come back to us?” So don’t put people on the spot. But equally the lay people that are getting involved in these things have to be prepared to be challenged. So they have to be prepared to be asked for their that’s what they’re there for but don’t be frightened to say, “I don’t know.” At the end of the day were only patients so you can play that card. But we need to be, we need to earn our place at the table to be respected and I think weve done that.

I mean the biggest thing was probably at the very beginning was looking at acronyms that are used in the research world and even the, well, what a phase one, phase two, phase three trial was, or a randomised control trial because you sat and you heard RCT [randomised controlled trial] and all of these things, and that my PPI lead did give me a list of acronyms but you know it took me quite a while to actually link the acronyms with what the areas were that we were working in. And I suppose sometimes you slip in to using acronyms yourself which at the beginning you would have said, “Oh no, no I’ve never used those but, but you do. But that’s important, that whole support from professionals has been really important to me, that there is a person, there is, in my case it’s a lead nurse who is the PPI lead and I’ve never felt, when I’ve asked a question, that the rest, even round the executive that everybody was rolling their eyes and thinking, ‘Shes asking a question, she doesn’t know anything about that. Never, they’ve always been very willing to answer me and that is so good that you feel that no question is too stupid that they’re willing to say, “Well let me explain this about research to you,” and that’s a big thing when you’re, when you’re new in PPI or even as you go along that that’s, you have someone who like is a mentor who can explain a terminology or even things like how drugs are funded and you know that whole process that is like an alien body to you and totally another language.

My first meeting, indeed my first two or three meetings of this Board I think largely went over my head. People have said that all professions are conspiracies against the laity and the way in which any of us in our own professional area talk in acronyms and use jargon, is a way in which we automatically [laughs] exclude other people. I did have to get through that. Now I’m reasonably confident and I’m not in the least shy about saying, “What does that mean? I don’t understand this.” And I would want to be very fair to that Board they quite deliberately appointed two of us to the Board so that I wasn’t isolated and nor was my colleague; we were able to support each other. We did have little natters about, “Well I don’t understand any of this; what do they mean?” and while there was, not very much in the way of induction there was plenty of opportunity to ask questions, to get support, to be guided through what I rapidly discovered was really quite sophisticated processes, and transactions that, that this network was involved in and which I needed to begin to understand. People were very pleasant and, and very patient, very happy to listen and to answer questions, so I have absolutely no complaints but it was quite a culture shock coming into that kind of environment.

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.

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.

Well like I say I mean I did this piece of research on 23rd Jan and although I’ve not been acknowledged for it but I’ve been acknowledged where the researchers have taken on-board and they have listened to what I’ve said about this piece of research and I think if they take it, they’ve done what I’ve said and it works and they do, it does help to bring more patients in, well I think I’ve done a good job, I think it’s worked.

Yeah.

That’s all I can say, it’s just this one piece of research and I said, I said to oh you tell me and I’ll tell you [name]. I said, “Will you please keep me informed on what’s gone on with that piece of research, let me know the outcomes?” I mean obviously it’ll take time. I mean this was only January, they had to take everything off, re-do it all and then they’ll have to wait now to see how many patients they recruit now for this study, but if it works and they do recruit more, a lot more, then I think, well I think they should then listen to what we have to say yeah, and you know if it works, yeah it does work, what I said. Not only me, other people as well but yeah I think that’s it.