I mean not surprisingly, in the early days you feel intimidated. This is someone eminently qualified, superb, some of the, some of the finest minds around. And I’m just an ordinary chap. But, I am an expert in my field, as a carer. I have a contribution and I’ve learned that they actually appreciate and value and respect that contribution. And sometimes, the academic can actually get so wrapped up in the academic side of things, they sometimes miss the fairly obvious, ordinary, everyday common sense answer.

I think that’s why my work with the local group of the national charity is important. It keeps me in touch with ordinary people, with carers, families, friends, with the people with the disease. I go out with the, with the group to coffee mornings, to hospices and places like that and meet people with the disease frequently. It also means that I have probably met more people with motor neurone disease then most social health care professionals will ever see. So that gives me an expertise.

It never occurred to me for one moment that I’d end up in the places that I’ve been to in the last, certainly in the last four or five years. From joining a local group at [university name] and expecting to have sort of some input into local research projects to the I guess, the most extreme place that I ever ended up being a speaker at an international symposium at the British Embassy in Tokyo, about patient and care issues in cancer research, was somewhere that I had never really expected to end up.

But generally, wherever I’ve gone in the, in the world, and it’s been in the world now, I’ve been to the USA, several meetings in Europe. As I say I am finding that as members of the lay community, weve been accepted, weve been welcomed with open arms and weve been treated as equals at the, at the conference tables that we sit at.

No I don’t think so. I mean I like the interaction with people in the field. I like actually speaking to people who are doing the research and being involved with them and seeing their enthusiasm and being able to ask them questions directly I suppose and that opportunity comes because I get asked to, why I’m allowed to go to these conferences and things of the associations I belong to.

They often don’t realise or can’t believe that I’m not a doctor [laughs] or a scientist.

And in a way this has a, it’s a good and a bad thing because I’m kind of able to explain to the ordinary public or another patient some of the terminology and the concepts which I now take oh look at that magpie I now take for granted because when I see; I can remember being fazed by the first time I saw lesion. My God that sounds horrible. What is a lesion? [Laughs] And of course, you know, I have to stop myself from using that term because, you know, it’s a patch or an area of skin that’s affected by something. And it sounded really terrible to me, very serious a lesion, my God.

I’d have liked a struct, I’d have liked a structured introductory course on methodology: what the terms meant, a little bit about how these studies were done and structured, and I don’t think they had any real idea about how to train lay participants up in this method. I got a bit of bone of contention about this. I think lay participants need to be trained and I don’t see why, I know a lot of participants participate at various degrees you get participants who will tell their story and that’s very valuable. But at some level I think you need maybe the citizen researcher who has actually gone through some level of training it might be online, it might be whatever and then form a pool of researchers which you can pick for so you know that, if you are getting a citizen researcher they are trained to a certain level in what research skills are. They’re not starting from blank. And one point which was made to me, especially about presentations, was it’s alright patient participants doing a presentation, but once they become too polished at doing a presentation and too professional then they’re no longer patient participants. And the same argument is if you become too much of a researcher you lose that, I’m not too sure, metaphysical element of being a patient researcher or being a patient you lose something by becoming more expert. Now that’s never really computed with me, I don’t see why becoming good at something should be a bar to going on to actually exploiting the skills that you’ve learned. That seems to me you might as well learn to be an architect and when you pass your degree they said, “Right fair enough you’re now an architect, we don’t want you anymore you’re skilled,” and want somebody with a little bit less training. The whole thing’s nonsense I think so I do think you need to be trained. People who want to go to that level, not everyone does, need to be trained as a citizen researcher if you like.

Being able to stand up for your own point of view when apparently dismissed or challenged and to recognise that in, you know, in academic or research discussion, you know, debate can be kind of quite vigorous, and that disagreement isn’t necessarily the end of the world. I was used to that from kind of family background but also having, you know, worked and had to, you know, to be director of something where I was responsible for representing, you know, my Unit and its values and ways in which I was trying to project it within the university and the to the outside world.

So being able to confront, it’s not about confrontation, but it’s about, you know, being able to disagree without being confrontational, but certainly you have to be able to confront people at times if their attitudes or behaviour seem, you know, unacceptable, if they’re overlooking a patient point of view. But it’s having ways of introducing things that you feel are important or maybe something’s been overlooked or been dismissed that you want to kind of get on the agenda, get discussed then you need ways of feeling comfortable about doing that and hanging on in there. And something that I probably haven’t got enough of or done enough of, but would be good to do, is in actually getting feedback. “OK so if you remember I said this last time? Well what’s actyou know, what’s actually happened as a result?” Have, you know, people will often come back to you and say when they haven’t been able to do something. It’s just not, you know, it’s been a reason for it and you may challenge the reason but if it’s real then that’s OK. Say, “OK well next time let’s get that into the funding earlier,” or you know whatever the issue might be.

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.

I think there are two or three different issues there. One or two people have said to me, “Well of course people become professional PPIs,” and you, there is probably a sort of trajectory you, you start totally ignorant, and naïve, and asking lots of questions about very basic things because you don’t understand how research is done, and you don’t understand all the acronyms and the , the structures of, of the research community and so on. And you, you play a, you probably play a role there in terms of encouraging the community of researchers to think about what they’re saying, the way they’re saying it and making things accessible to the wider public. And that’s probably very helpful and it is important. As you get more knowledgeable, you begin to slip into the same problems yourself, you know, you use, you know the acronyms, so that you use them. You know the language so you accept it, and you stop questioning it. You may be able to contribute more in terms of knowledge, but you’re actually now becoming contaminated by your access and increasing knowledge. And then there may be, well be a point where actually you’ve become so embedded in the organisations and the ways of doing things that you cease to become useful, and you probably better go on and do something else with your spare time, and volunteer in something entirely different. So, yes, I think there is a kind of trajectory that possibly some of us go on in that respect.

I don’t think it’s inevitable, and actually you are probably going to be, constantly refreshed and challenged by the, your communication with and access to new people, new PPI people, who are being recruited, and bring their own understanding and individual contribution.

And do you think theres a point at which lay members or people like yourself, users, is there a point where you’ll be too expert in all of this to give a lay perspective or PPI perspective?

Yes I do. I hope I never reach it but I have seen people not actually on the, on the research side, but lay people who have become simplistically too big for their boots and there needs to be a safety mechanism where someone who gets like that is gently removed. They don’t, they cease to be objective, they think they know it all and that’s dangerous in my opinion for various reasons. And I hope that I continue on the path of learning all the time, and again it comes back to that two ears, one mouth: listening and learning all the time. But I do see that it, it can, in certain instances become a danger.

I think people who stay in the PPI world for a few years do have a certain shelf life in what they’re doing. The important thing for my background in cancer is that once we have served our time on a clinical studies group, we come off it the same as the professionals do. Now we can go onto another one if we have a particular reason or background that would allow that to happen we can go onto another form of research committee somewhere. Certainly, if weve developed skills and weve had training that’s the logical thing to do, to actually move around. But I don’t think you can stay in the same place because I think you do become institutionalised, jaded, comfortable whatever word you care to use. There are good reasons for moving people on after three years, five years, two terms however it may be measured and I think it’s very important that the patient reps are treated no differently from anyone else. I think too it does all of us some good to shift around just for the sake of bringing fresh pairs of eyes to old situations. All committees need freshening up every now and then, whether it’s health research, or school governors, or running a rugby club, you always need a bit of fresh blood, a fresh approach every now and then. It’s a good thing to do.

And every one of those people should be encouraged to have roots outside within their specific patient community if that’s at all possible. Now, it doesn’t mean to say they have to be necessarily an active member of a national charity or anything like that but maybe they do some local work with a support group so that they can tuck into the way that, you know, other colorectal cancer patients or breast cancer patients, prostate cancer patients are thinking and feeling and behaving, and can talk to them about their involvement in clinical trials, for example, and how they’re feeling about that. Weve got to encourage our representatives to be as representative as they can, but never to lose their own specific patientness. You know, there is value in that individual patientness which is very hard to deny.

And it comes in bursts. I’m still a patient so I still have to go for health checks and things and in those periods I feel very much like a patient. And all the patient feelings that you had way back at the beginning come back and you’re acutely aware that you’re still a patient. But when those peaks have passed then you don’t feel quite as much as a patient; you just feel like a normal person who’s contributing as part of a group, which is, and that allows you sometimes to be more objective, I’d like to think. Yeah, I don’t think you ever stop feeling like a patient really, but the intensity of it varies depending on what you’re doing and what stage you’re at.

And what about this issue about kind of being involved for a long time and how you can sort of retain your ‘patientness’, as it were, to bring to the table when you work with researchers?

Yeah that’s quite a challenge because if you’re fortunate enough to be a long term survivor of a nasty disease, then you naturally will forget, not forget, but you will become less acutely aware of your patient experience. So I think the way to keep that is to continue to remind yourself of what it felt like without making yourself anxious. But maybe to pick something that you’re doing that actually will help to remind you. So maybe you pick a project or pick an organisation that’s been very close to patients and that would serve as a useful reminder to you on an ongoing basis what patients who are still ill or still have a battle or are still going through treatment or whatever, what they’re having to face and it’ll remind you of what you had to face at the time. So that would be no bad thing. Not always easy to pick and choose what you get involved in though.

Why’s that?

Well just because that’s the way things were. I mean I suppose you could seek something out. I suppose you could make it your business to seek something out that was very close to patients. And sometimes things present themselves to you and at a time when you either want to do it or don’t want to do it and it maybe the right thing, it maybe the wrong thing.

I mean I’m a fifty year old person who had a microbiology degree which I completed when I was twenty one or twenty two, so for thirty years they have, if the average age is my age which generally it is, there are some people a bit older and some a bit younger, there are some PhD students who are in there mid late twenties. They are truly experts in their field.

I’m not an expert and not only that, because I have, been outside the system or a user of the system I see it as a user. I don’t think that they can ever see it as a user, in fact, I’m going to tell you the story I read in the newspaper, where did I see it? There was a two page spread in my local paper and in it there were three specialists, prostate cancer specialists, who all developed prostate cancer. So the story was asking the prostate cancer specialists to discuss their treatment and what they chose to do as consultants in their field, to be patients with their own disease.

So one of them chose to have a chemotherapy and radiotherapy; one of them chose not to have the chemotherapy but to have the quality of life that he knew chemotherapy would withdraw; one of those people, one of the three people did die, one of them has survived and gone back to work, and the one that survived and went back to work put down that he could never have known what it was like to be on the other side of the fence and I think that’s what a PPI person brings is being the person who walks into the room who is terrified for their own or their child’s health and, or concerned if not terrified if you’re not in a critical condition, and who constantly comes up against the medical jargon, a system of how things work and having experienced a terminal cancer diagnosis for my husband, nothing can prepare you for the shock that you go into when you have a terminal diagnosis. And no matter how much training and no matter how many years you sat as a medical person, handing out that diagnosis and watching people in front of you, you don’t know what it’s like until you’ve been that person at home, trying to eat a dinner and throwing up at the thought of the person opposite you dying. You don’t understand that until you’ve been it. So PPI representatives should never feel that they’re on the same side and I don’t think you do. So I don’t feel I’m getting too close to them because I’ve been on my board and I’ve been allowed to stay on it for longer than three years.

I’m only allowed to stay a little bit longer because they do always turn all of these positions which they should. I’d hope to get another one, on a different board and pro-active again and help because I know that I respond so well and my work’s encouraged. But PPIs are very essential because they just don’t understand and that article I read in the newspaper about these three gentlemen who got their own illness and took the treatment; they all were shocked and the last one who was able to go back to work said that the biggest thing it gave him was empathy. He had never understood what it was like to be on the other side of the table.

Because this is all quite complex, you know, were talking about, you know, health research itself is complex I think involving the public is not a straight forward thing to do particularly in not all areas. So particularly like in acute care, you’re doing a breast cancer study, maybe become completely obvious who you involve and there may be loads of breast cancer organisations out there that you can just send them an email and go, ‘Are there any patients?’ you know and there you are sort of do you know what I mean?

So for example one of the things, because now I’m, you know, obviously in a way quite a professionalised public involvement person. I still do act as a mental health service user but I haven’t used services for eight years. I mean I still think I’ve got, I’ve got bipolar disorder, I don’t think anybody would say I haven’t got it, certainly no psychiatrist would say that and I think I still have vulnerabilities but I’m fortunate in that I’ve been well for a long time and I no longer take any medication.

So in some respects if you’re doing a study about current mental health services, peoples experiences of them, I’m clearly not an appropriate service user to ask. But in other situations, so for example in the suicide programme; I’ve never actually tried to kill myself but I’ve wanted to kill myself and I’ve had quite a lot of the, you know, I’ve been clinically depressed, I’ve been detained and actually because some of the components of the suicide programme actually look at suicide methods and how fatal different methods are, actually I, you know, we think this is me and the people who I do it with you know it would be very inappropriate to involve people who are an active risk of suicide, of harming themselves or killing themselves. You could not be, you know, it wouldn’t be right to involve people like that in that, those components of the programme so actually the fact that I’m a bit sort of back from my experiences quite helpful.

And quite often informally not in the meeting strangely enough, but outside the meeting it, I’m buttonholed by patient researchers and they say, “Well actually we wish we were doing what you were doing.” But having said that I once put forward what we were doing at [city name] and afterwards one of the patient participants got me in the corridor and said, “The trouble with you, Dave, is you’re becoming a professional patient”. And I sort of said, “What do you mean by that?” “You’re a professional patient”.

So that threw me back because I wasn’t quite sure what a professional patient was and am I becoming one? I don’t know. It made me think very hard about what my role was and what I was supposed to be doing.

And what did you come up with? I know you sort of mentioned this earlier on but in terms of you being a professional patient?

I decided that I wasn’t a professional patient. I didn’t understand the term. I was becoming a much more informed patient, a much more informed citizen researcher if you like and I could do the job better because I understand what research was. I had a lot of confidence in how research goes forward. I wasn’t frightened to make my views known in a professional way within the group and if that’s being a professional patient then I don’t know what a professional patient is. I’m not a professional patient. I regard that as an insult.

Yeah and I have to say that that is something that I think is the cause for concern. I talked earlier didn’t I, about the professionalisation of lay members on research ethics committees and getting people who were perhaps very far removed from direct experience of patient care. But, I think, that someone like me, after all these years theres got to be question marks about when I stop being really lay and I become professionalised, if I’m not already myself. And so the things that keep me going, I am aware that I need to be careful, that I don’t lose or haven’t lost what it is I thought I was bringing in the first place. I mean that’s why when I had to leave the ethics committee after eight or ten years I thought that was absolutely right. I think you should refresh membership of all committees like that and you need new people coming along, both clinicians and lay. But, I suppose because through various health problems in our family, we do have a lot of contact with the health service, both primary and secondary and sometimes tertiary care. I think I do still feel that I do bring that awareness of what it’s like on the ground, and I do talk to a lot of people just even people in the street, friends, neighbours about their experiences and I still feel that they help to inform how I see things. But, you know, I mean I am mindful of that loss of freshness and I need to think hard about if what I’m contributing is different now and that’s quite a sad thought really [laughs], you know, giving it up.

Why’s that?

Well because I still enjoy doing it, and I suppose I still feel, well I suppose I must still feel I’m contributing something, but then I am aware that I’m not the best judge of that.

When it comes to our, the question of whether or not people can still be useful ten/twelve years after their own illness has ceased, I’m biased because I had a long time after I recovered from my first cancer before the second one hit me, so I’m not a very good example of this. But, I do think people are still useful. I firmly believe that. But that happens in all walks of life. You don’t say someone has suddenly ended their shelf life as a something just because they reach a certain age or at least we shouldn’t. It’s whether or not they can still make a contribution and the beauty of PPI is that there are always opportunities to make a contribution somewhere else. We tend to think in structures and I certainly tend to think and talk about structures, about committees, but actually it’s far more useful to look at the experience and the skills and the talent that people have, and how they translate into other areas. People can still give advice on parenting long after their own children have grown up. Teachers can still teach, even if they may not be teaching geography, to fourteen year olds, they still have the skills of being a teacher, the skills of explaining things. There are things that we all do in life, which we can translate to different circumstances, but I do think, having said that, that you cannot sit on the same body or perform the same function over and over again. We all get tired doing that, we all, our cars all run out of, energy sooner or later the engines die, the tyres go bald so do we. We all need to freshen up every now and then.

I think it’s important that these new consumers have a voice and I guess we get away with it because weve got new people on rather than the same people. And I’d like to think, I don’t think they would see it yet, but I’d like to think I’d almost like to be a mentor for people joining the, as a PPI consumer reps, I’d like to think that I would like to be their support person to help them fulfil their role and to get the most from the job, but that it would be more about their voice rather than mine. That’s how I’d like to see it evolving and moving forward.

Because I was going to say that if you do have an end point to all this.

Yeah.

What do you do with the people who have had this experience and gained these skills and?

I know. Well that would be a nice way to maintain the contact, wouldn’t it, and to almost be that support person for them in the role because I think there has to be an end point. I think it is different with chronic illness because you’re still sadly using the service; you’re still treating your child. Nothing’s changed other than slight advances in medicine so nothing’s changed in terms of your patient experience. You’re still at your clinic every three months, so you’re still very much connected with the service and it’s still very personal to your family and to your connections. But, yeah I think that would be a really nice way of actually continuing to be involved and your experience and your confidence in your relationships that you’ve built up still being, still being valued and I guess still being I don’t want to say used because I really, really dislike that word, when you use people but it’s still being utilised I guess.

I get about probably an email a fortnight with an involvement opportunity. Back in my highly enthusiastic days about two years ago I used to just about apply for everything, it was such a great exciting novelty thing and I was so enjoying it. Over the last two years I’m now much more selective. So I think, well that’s a better fit than that is so I can make more impact on that one probably. And also I find that the number of people involved has increased enormously, so that I wrote to IP and said, ‘Look why don’t you ration it so that those who are the old hands don’t automatically, because they know the system, you know, get considered first. Spread it around more. I don’t mind being less involved, you know, I’m not going to be offended by it, give the job to somebody else. And that’s been happening. So I’d say probably one in ten , no that’s a bit high, one in five of the things I’m interested in I get accepted for, which is great because it means other people are getting a go at it so.

Again it’s through various organisation, different organisations where I’ve had invites and done presentations and I’ve done presentations in Milan, Paris. I was invited to, just last year, invited to Geneva for a European lung cancer patient meeting, which is still on-going but [coughs] theres, theres involvement issues there about finance how, how do you finance these things? [Coughs] Two years ago I attended the American Association for Cancer Research annual conference in Orlando and presented a, a poster there describing consumer involvement in cancer research in the United Kingdom. And we had quite a lot of interest shown in that because it was a, [coughs] a kind of different area than what they were looking at in America. They didn’t, were kind of unique in the United Kingdom having the, the sort of consumer liaison group involvement in cancer research and there doesn’t seem to be the same, not that I’m aware of, in, in other countries and in Europe and in the US. And they were quite interested in, in the, the way that it was organised and co-ordinated which it didn’t seem to be all the other advocates, as they called us over there, were representing their own particular group and when it got to research there didn’t seem to be this co-ordinated movement of involvement of, of consumers in the production of the trial proposals and study proposals you know. So yeah part of it being, I mean I’ve had invites to go to San Diego to the, to the, also to the International Lung Cancer Conference in Australia but, you know, it’s getting financed to do these things you know, which is, is very difficult but well keep trying [laughs].