I think probably the most difficult things that I found is feeling frustrated with kind of meetings and with other service users and not agreeing with them and thinking they are being unreasonable and , you know, those sorts of inter-personal difficulties and differences which, you know, I find more difficult to manage.

So it’s not so much that I’ve been upset by the things that I’ve done, it’s more like the, you know, in trying to have a discussion about something with a bunch of other mental health service users, you know, weve practically had world war three declared or something, do you know what I mean?

You know I think it’s part of the territory and actually that’s probably the most difficult thing to manage, you know, that people, some people are, you know, I mean not only have they got, you know, views that you don’t agree with that other users don’t agree with but they’ve got their own agenda, they’re here to get, you know, to make their point about X whether X has got anything to do with why anybody else is in the room or not. You know and you and other people have got to try and deal with that, you know, so I think that’s the, that’s the more current emotional difficulties and I think those are some of the reasons that public involvement is challenging because some people, some, you know, as with any group of people some people are easier to work with, are more co-operative, are more able to join and, you know, say things but be part of something and some other people are much confrontative or oppositional or critical, you know, and managing that, you know, canI mean I’ve been in mental health meetings where people have, you know, they’ve been poor researchers doing something and some service user has said, you know, “You’re like the bloody Nazis.” I mean that’s really difficult to be, now I know, you know, you can, you can intellectually, you know that that person’s had a bad experience, they’ve felt, you know, controlled by mental health; you know you can understand it but in that moment, I mean a) that’s horrible for those professionals to just get all that anger, you know, and far worse than that I have to say, I’ve heard, you know but that’s a real difficult, but even if you do understand it you’ve still got to manage the situation and there are lots of other people who are all going, “Oh my god,” you know. That’s why it’s hard.

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.

Unless you go in with a particular brief to represent a specific organisation, and clearly some people in PPI are doing just that, I mean, they may be there to represent a particular disease network, for example. With that exception none of us are representative. We all have a unique experience, a unique set of skills, a unique set of motivations for being involved in this. The, one thing that I would hope that we would offer would be, which is in common, would be a shared enthusiasm for the research effort and a shared concern to see it improve and develop and widen. So, beyond that, I think that each of us is different. I think the consequences of that are, well many really.

I get slightly worried, and again I see this when I’m reading research proposals, where researchers have assumed that because they’ve got one patient involved they have therefore got a representative view. I think that’s always dangerous. I mean, I think it gives a researcher a misguided sense of the degree of patient involvement, and I think it puts the patient themselves in a very vulnerable position.

INVOLVE guidance I think suggests that there should be at least two patients involved in any particular set in an organisation, research project, and whatever. And I think that’s absolutely right and, in a sense, the more the merrier. You know, if you’ve got five patients in a room, you’ll probably get ten different opinions in the course of a meeting, which is fine. I mean that’s good, it’s important to explore the parameters of any particular set of decisions and decision-making. It’s then down to the people who are actually making the decisions, to make a decision, but, they need to be hearing, I think, as wide and diverse a set of users possible. So, we, we shouldn’t be seen as representative, we simply represent a commitment to openness and accountability, and a conduit, perhaps, to a range of views, which the professionals, because of their education training, sense of purpose, direction, would not necessarily come up with themselves.

Now it depends, I suppose, if the question comes at me, ‘How are you representative?’ and it’s got a slight attitudinal tone, to the way the question’s answered. I have an attitudinal back question response, and I retort, which is, “And how representative are you?” Because, if theres a GP at the table, are they representing all GPs? Is the clinical nurse specialist representing all clinical nurse specialists? Is the researcher representative of all researchers? But, that’s when I’m pushed, right? Representation is an issue. It’s one that we all need to face.

So I actually come with a whole lot of almost representativeness. So it’s just helping people. So on its base level, it’s about helping people say, “You can’t be representative. You’ve not been voted in by, you’re not an MP, you don’t have a constituency”. But actually if you’re going sit at the table, along with others, it is important that you are not representative, you are a representative of a patient. You are a symbol of that patient. You’re like the word ‘representative used as an artist. It is a representation of a jar. It is not a jar, it’s representation of a jar. So I sit there, not as a representative with constituency, but what I’ll often say to people is, “It is important you have, not a constituency, but how do you ground yourself? How do you, when you sit at the table, go out and talk? How do you go back and talk to self-help groups about what you’re doing? Do you report back?” Because it’s got to be a two way. It’s not me sitting at the table, “Oh good I’m here.” It’s me sitting at the table going, “Actually I’m here but what job have I got to do to talk to others?”

There are obviously times when there is disagreement, even within the patient public, public arena. I can, I can put a viewpoint at a national meeting, or a local meeting and get diametrically opposite views within those meetings, but I accept that and I live with that.

One of the things, one of the sort of problem areas that I’ve always had, is when somebody asks me personally to write a letter from a group and represent the views of that group. And that becomes more and more impossible to do. Because even if you think that, that a certain viewpoint is an obvious one. I always meet the person in the audience who proves to me that that viewpoint isn’t obvious, and there are good reasons why it’s not obvious. And I love that. I love that sort of level of debate, that debate reaches on that.

So I’ve shied away from representing groups with one letter. And the world knows that that’s how it works. Go and sit in the middle of the House of Commons during debating and you can see that and the patient and public involvement world is just like that. It’s just like the House of Commons. So it’s a case of at times listening to all of the views and deciding on the middle ground, the ground that works, not an easy thing to do. And, I guess one of the things that I’ve had to come to, to come to terms with is that my views have had to be subjugated sometimes by the views of the group that I’m working on, and chairing local and national groups that doesn’t happen. And I find myself arguing a case or a point that I personally might find difficult to believe in. But you’ve got to do that, and I think it’s important that you do that. So probably I hope that my two ears have worked better than my one mouth, but I’m not sure [laughs].

Involved yeah. Well you do need some listening. You need to be able to encapsulate your own ideas and other peoples ideas, other fellow patients, carers, either know or imagine, anticipate what they might be. To be able to represent a diversity of views some of which might really contradict your own and be able to say that you know theres a range of views here. One of the things people don’t do so much now but it can still happen is people would say, “Carolyn, what do you think the patient view is on this?” And you say, “Well actually, you know, there are lots of patient views”. And that’s, you know, you’ve got to learn to live with that. I can’t give you a neat, some patients will think this about it and some will run away and some will think, ‘Oh no I couldn’t possibly,’ or some will think, you know, of course, you know, a lot of things you have to be able to say , “Look I think you get a range of responses here, but the way to maximise your responses could be to do this,” or, actually what you may be saying to people is I don’t know and you have to have the confidence to say that But heres a way that you could find out or that we can jointly find out. Have you thought about?” and then make a suggestion as to a way in which they could really get the kind of input that they want. So there are several things there.

I bring something unique to the research and that has been exciting for me.

OK and so what is it that you bring?

I bring my own unique experience of what it has been like to sit in a room and say, be told you’ve cancer. Two: a unique experience of what it meant to me to have treatment, the unique experience of surviving and living of having had cancer, and so that is a unique experience to me and where it’s appropriate then I can share what it feels like to be there and what the impact of different treatments and the way even people explain treatments, all of that, what that meant to me and I can’t say that it means that to all patients, can’t speak for them all, but I can speak for how it affected me and the impact on me, and on my life and on my family.

You bring who you are because before I was ever a patient it’s a person, and so the life skills that you bring from all the experiences which you’ve had through life, whatever they were, the good ones and the bad ones, through your working life, through your family relationships, through all of that impacts on who I am as a person and that’s what happens when I’m round that table as a partner with researchers, just who share what is experience on a personal basis.

And what about the training that, the induction that you talked about, what did that involve?

The first half of the day was explained to us what would be required of us.

And basically what is required is to be you, because they want feedback and what it’s like to be a parent and, if you had been asked to take part in research when your parent had been, your child had been ill, you put yourself into that position when you think about what was going on. So they talked about various aspects of research, for example, taking blood. When you take blood from a child it could be painful, when you take blood from a baby, a baby has a limited amount of blood, so taking blood from babies they have to take much smaller amounts. So they talked to us about the ethics of procedures that were required so that you were able to think outside the box and not just about your own child’s illness and then you’re not too focused. So instead of me only thinking about what it was like being the mum of a child who was sick, age seven, in hospital for three weeks, I could perhaps extrapolate outwards and think about what it would have been like to be the mum of a child in the intensive care unit with a neonate, or a child who’d had an accident and then ended up in hospital for example.

So that, the training tried to broaden our ideas of what was required.

It is about not involving too much passion in the process.

Because it isn’t about only delivering your case to the table otherwise it sounds like you’re the one person beating the drum for just your one condition or the one thing that you’re worried about.

Where what you’re actually required to do is to be able to sit with a group of up to maybe eight or ten people who are experts in their field and to contribute rationally, and I believe if you want to influence them it’s best to be able to be rational and objective when commenting.

You know people who kind of get on the high horse about things is maybe understandable at times if you get very frustrated, but it’s just not productive. So something about ways of working that people are comfortable with I think that’s important.

And I think sometimes, you know, I was talking about relationships with researchers and relationships with fellow patients involved in these kinds of things is it’s important for them as well of course, you know actually, you’re OK and overcome their fears or their stereotypes which are often to do with people having hobby horses, having a single issue, being stuck in their own, you know, their own history, some problem that they had, or if they’re a carer that and bereaved that theres someone, you know, and theres some difficulty that they haven’t resolved. There are lots of, if you like, stereotypes that people, I want to say had because I do think there are fewer of those around now as people have more experience and actually see well most of us are actually, just kind of human and were not always wanting to bang a drum or have just, you know, one issue that were talking about.

Some people I’ve seen who’ve got involved have been sometimes wedded to changing one thing. So they have wanted more research into a particular cancer or more of a particular type of research and they have some days banged a drum on that. And again there is nothing wrong with that.

What I urge people to say is, “Once the door is open, you can make those points. You can continue to hold those, but what’s really important is that you are part of a wider dialogue.” Some people have got involved at the other end of the spectrum because they’ve had a very, very poor experience. They’ve either had a loved one who has died or the treatment they received and sometimes with the best will in the world, sometimes those are horrendous. We need those voices in there. But again it’s, how do you have that as your passion and your drive, but how do you leave some of the luggage of that at the door? Because what were most interested in is working in partnership and getting all those voices together. And once were there, course we can take those agendas. What’s important is when we arrive in the door is to find which is the best other door or window or place to make those points. And when we do that we become a force for real good, we become a movement of change and we become partners.

But I found that even looking at the paperwork when I did the steering group, and I found that because that was about very close to my son’s experience, and I just found that too distressing even doing that, so I stepped away from it completely for about three years until I felt a bit stronger and a bit more, had a bit more perspective on it and then I did the reviewing. But yes, there were things in there that still could push the buttons. You know, things around bereavement of parents particularly still, and things around palliative care, still, still could quite upset me. But as I say that’s something that I had to, I had to decide that I was willing to, willing to do that.

I suppose researchers tend to assume that they need people who’ve got direct experience of that thing, which..?

I think it depends on the roles. If what you’re actually wanting people to do is, is to talk about something that is directly relevant to that condition, then having that condition obviously does help. If you’re wanting somebody to say about how participants with a particular condition might cope in your study, then you might need people with that condition to do that. But I think in other roles, people who have a bit of imagination so they can put themselves in other peoples shoes, and experience in other fields can be very useful in looking at it in different ways. Yeah.

Can that overcome some of the hobby horse problems do you think?

I mean I think that’s, yeah, it can do. But you sometimes, I know of, I know of some professional participants who do have an agenda that they take wherever they can get heard. That can be a problem. But mostly, if people have a very clear idea of what would be really useful for them to do, they will cooperate with that and do it. I think the danger of the hobby horse riding is most apparent where there is not a clear guide to what people, what is wanted from people. And, and what they can usefully contribute, and then they tend to fall back on what they always say.

But you know for people who work in areas where either they’ve recovered and so they haven’t had their conditions for a long time or whatever, do you think that they can still remain involved? Do you think they’re still, or should people have that?

Now that’s a really good question. Yeah because actually that’s the difference between a chronic illness which is a lifelong for most of these children. The ones that you remain involved with most of us our children will have this into adulthood. So that’s completely different because the issues are always there and as the child grows up there are new issues. So our next thing will be transition to secondary school, and then to adult services, which will be a different stage altogether. So for somebody, for example, who had a condition or had an event and then they are no longer they’re discharged from the services. I think their experience is valuable, but I think it gets less valuable as time goes on sadly. But yet a lot of these people are really great, but I feel that the position should rotate. And I think even I should rotate, even I that sounds very arrogant but I think even I think I shouldn’t stay on the committee, I think new people should keep moving it forward and what’s really great is that we have recruited new so everybody on the committee is new just through circumstances I’m actually the only original consumer left on it.

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.

It cuts both ways. We feel, one of the criteria for our membership is that people should be at least a year after their treatment because we feel you need some time to actually get your head round what’s happened to you and to be more detached from it. You can use your experience it’s very important in what you do, but you have to be more objective about it, you have to be able to see outside the box and, you know. We are a generic cancer group, not a breast specific, so we have to be able to comment on all cancer research, not just a, the type that has affected you. I think there is a danger that people, not only do people get too , too used to doing it; I don’t think it’s actually healthy for people to be over, you know, too much time spent on it, which , I mean you get a bit boring when you’re, you know, socialising and you talk about this all the time. It’s also, it’s good to have other, to maintain other non-cancer parts of your life. But it’s also, you can become a professional patient and I don’t think that is necessary that is more of a problem with, to representativeness, I think.

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.

Yeah, they still have, have a lot to offer. I mean I’ve been away, you know it’s twenty years since I had lung cancer but I would like to think that I, theres still things that I can offer. I mean the treatment I got the intravenous treatment I got in many situations that hasn’t changed; you know that treatment still, still exists today. Yes, theres a lot of new treatments which are oral treatments and everything else but for many, many people the intravenous chemotherapy treatment is still one of the basic treatments for cancers you know. So where there have been many changes theres still some things stay the same you know. But yeah, you know, whether you’ve been out of it and away from it you can still, you still have a lot to offer and in some situations you’ve probably got more to offer maybe because they’ve had all this time to reflect and things and think about things differently, in a different aspect. So yeah, you know, by all means, you know, whether you’ve been out of it for, away from treatments or involvements for years yeah you know theres still a contribution to be made, yeah.