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.

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.

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.

The skills that a PPI representative has to have is to bring their own experience to whatever the project is and it needn’t be anything which is technical, clinical, academic, it can be just their breadth of experience of life, because with that background they will have understandings and insights into issues that can be brought to bear even on something which is clinically very sophisticated. And it can be something simple, the obvious example that can be inhibiting for anybody views on having blood taken. Will it hurt to have a needle put in your arm? How much blood are you taking? If you put it in millilitres it needn’t necessarily mean anything to anybody. If you describe it in teaspoonful’s that can raise a question [laughs] “What do you mean your teaspoon, you’re taking a teaspoon.”

But it can be things which they’ve had experience of in, in their lives that may be about trauma, inhibitions; it may be about experience of relatives, you know, “My auntie died of this or had that and she needed this, we didn’t know whether we should do this, we couldn’t understand what the doctor was saying or what the nurse was saying.”

And I think that’s, that’s one of the main contributions that lay people can make, “What does that mean? What does that mean for me? What does that mean for my friends? What will it mean for the future? Will it make me better? Will it make my auntie better?” So it’s the questions isn’t it that anybody can bring why, what, how, when, what if, will it, how soon will it and sometimes clinical researchers may not, but usually they have, may not have thought of the issues with that simplicity so I’m, I suppose making a case for public and patient involvement to make research as simple as possible in how to understand it, what it’s going to achieve and how you tell the public about it.

I had some good advice recently, never forget that you’ve got one mouth and two ears. I quite like that. And I think the ears are very important and I think, I hope that one of the things I have done is listen carefully to the debates and the discussions and then contributed as I’ve seen, as has been important and necessary.

Whether I’ve got a special skill set I’m not sure, but the, because there are greater and greater numbers of lay people getting involved in the, in the research world, the team of skills that we, that we bring to the table is, is becoming more comprehensive and were able to contribute, you know, you can find the right person to contribute to a particular type of meeting. And, well, the selection of individuals for different types of involvement I think is important. So as a patient or a carer, my belief is that everybody’s got something to contribute, but how you get these different people, how you make their voices heard, is, is the way that theres sort of pyramid involvement has developed.

What about the language that all these things are written in, is it something that you find accessible or?

I don’t think it is for a lot of people and in fact at the end of the last meeting I attended in Southampton I was chatting over the tea break or whatever. I stay long enough to mingle and sometimes I will single out a speaker who I was interested in their talk and go and say hello, and I had a lady come up to me and she goes, “Ooh my goodness,” she said , “I don’t know how you cope.” And I said, “Oh it’s alright I’ve got a microbiology degree,” and she goes, “Oh thank goodness for that, I felt so sorry for you, the last four hours of all of that stuff, it would have been very boring otherwise.”

So it does help, I’ve always had an interest in medicine, things medical. I’ve unfortunately had a lot of exposure to illness either myself or in my family which means that when they’ve got ill I’ve researched those diseases in great detail and I have no problem with the lingo.

But I’m sure that other people would struggle with it. Perhaps other groups though, and other types of work, it’s not as technical. I am in a group where they’re looking at antibiotics and you’re always measuring the efficacy of those and I actually did a final year study at university, that might have been one of the reasons that got me extra points, was that I need a microbiology degree, but in my final year we all had to do a project as anyone does when they do a degree and I chose to do a medical microbiology degree at the London hospital and I looked at the technical term is a serum and minor gylcose side levels for an antibiotic to see whether it reached ototoxic and nephrotoxic levels in people. So add the background to that, basically I was looking at whether the blood levels of the antibiotics were getting so high that they were damaging somebody’s hearing or kidneys and, so I’m very lucky that having got that background, made it very appropriate because this group does spend a lot of time looking at, you know measures which have absolute values so you’re looking at things like that.

Whereas perhaps if you’re looking at cystic fibrosis they may be talking far more about treatments of that which is a, might be a physical thing cystic fibrosis is treated by physiotherapy for example, so there may be far less technical language. But when parents or lay people become representatives on a condition, the thing is the medical profession know that were experts in our own conditions. So you may not have the absolute scientific jargon but you might have read around your subject as much as they have or more than they have in an attempt to find a solution. And you will have stepped outside the traditional box that they’re operating in so you can bring new insights. So not having the exact lingo I don’t think is a problem because you’re normally only invited to join these things if you’ve got personal experience.

What do you think makes a good PPI rep?

Somebody that is very self-critical, that is honest. They have to have a certain level of passion but they’ve got to keep it under rein. They’ve got to show respect as well as have respect from the groups that they’re working with, if be they be clinicians or academics or politicians and you know they have to engage in a true way and I think ultimately be a critical friend. I think the role of a true critical friend is really powerful because if you have that respect in place, you can criticise but you can do it in such a way if you’re informed that then people take notice of you. You know I think a good PPI rep ensures that what they say is tempered, informed and goes down in the minutes.

So, you know, I mean I think everyones got a point of view and a perspective and actually, you know, I suppose one of the challenges is I guess as I become more professional because in some projects for example, you know, I know some projects where they would say they’ve got public involvement but the public involvement are professionals who happen to have those health conditions. You know and, you know, so theres a question about how, you know, how far in whose camp you can be and what it means to bring a different perspective because actually if, you know, if you’re a professional researcher but you’ve also got diabetes you’ve got perfectly legitimate experience of diabetes that any other patient has, and you might be a lot easier to involve but actually it might be, it could potentially be more difficult if, you know, if you’re a researcher yourself when you are involved, it might be more confusing about what you’re role actually is are you there as a researcher or are you there as person who has diabetes or both. You know so there are, you can’t, I don’t think you can ever say that that person’s experience of their health condition is not legitimate or isn’t input, you know, like there is not something that can be offered from that. But you know, but, you know I think we would, you’d have to start questioning involvement if it was always people who were effectively insiders, you know, wed probably want to criticise it so there is something I think about having a different, you know, not being in the same, having, bringing the same perspective because that’s the and I think the point is to bring a different perspective, a different way of thinking.

Well there are people who have retired, sometimes from teaching, were people who are in their twenties. One girl in particular whose mother died with breast cancer and who felt that she wanted to get involved in some way influencing it. Were people who range from people in their twenties right through to people in their seventies. Were people who have worked in a shop all their lives and bring great communication skills with people, were people who have been scientists and been involved in chemistry and different things like that, who bring different skills.

Whatever anyones background is, it’s important because they just bring who they are, and people are involved at all sorts of different levels. Not everybody wants to be involved on a trial management group, not everybody wants to sit on an executive, but all of them want to be involved at reviewing what information the patient gets.

There is a danger that researchers choose people that they’re comfortable to work with because they quite like them. And I have met a lot of people who’ve been researchers in other fields or who have been statisticians in industry, or who have been used in public involvement roles and they’ve been very good at it, but I think public involvement needs to reach wider than that.

It is, that does mean, that you need to have training for people to do these jobs. As I say, I was lucky that my opportunity to get involved happened after I had learned how to read long documents and get information out of them and present it back. That’s something that I’d been into university and learned. A lot of people in my community haven’t had that sort of education and for them to do that sort of job you need to give them the training of how to do it. So that’s one way of getting more and different people involved.

You also need to do different sorts of involvement. Reviewing research proposals isn’t the only way of inputting into research, and so researchers need to be a little bit more, a little bit more inventive about how they involve people: having events where they talk to people in different ways, or get people to put their views in, in different forms. That seems really important to me as well.

I think from my perspective I’m most pleased about getting different people involved who have very good stories and very important stories to tell researchers, who may not have otherwise been involved in the ways that they are. So I have supported other people to learn how to do reviewing of research proposals, and introduced them to other ways of being involved that they’ve not come across. And I’ve been helping to design this training that takes actually some of these ideas out into communities, and gives other people the idea of how to get involved. So I think for me that’s my main, the thing that I’m most proud of I think really.

First of all you must be professional in your dealings with people. Theres no room for the lone wolf, the, somebody with an agenda, a grudge. You’ve got to be professional. You’ve got to be able to work as a member of a team. You’ve got to be prepared to read around your research subject and it’s got to be an on-going learning experience; you can’t expect just to drift along and be spoon fed everything. You need a certain amount of listening skills. You need to know how committees and groups work. What, what, that you go through the Chair, that you don’t interrupt people, that you use language which is moderate and professional at all times. You need to be committed if you commit yourself to something you need to carry it through, you know, apart from obvious, you need to carry it through. You can’t just bottle out half way through because you’ve lost interest. I’m sure theres lots more. I think you have to be, have a certain degree of altruism, yeah that’s about it I would think. I’m sure theres lots more.

When you said, the first one you said was professional what do you mean by you have to be professional?

You have to relate to people in a team as professionals and the certain rules you have. You don’t go talking behind peoples backs; theres certain confidentiality there. When you’re in a meeting you obey the rules of the meeting. You don’t pursue your own agenda and disrupt the meeting. It’s pretty obvious really. You work as part of a team, that’s what professionalism is about. I don’t curse people behind their backs, I don’t spread gossip about the team leader, I don’t undermine the project for my own dubious reasons. I act in a professional way in which I’d expect people to act towards me.

Well I think it’s important not to believe everything you read at, you know, they not take it at face value. I think also that site I mentioned earlier, the Behind the Headlines is good, though not everything gets on it, obviously they have to select the things they look at. But you just have to, we have the internet now and it’s for good and evil. I mean you can, you can actually be able to follow or get hold of information about things more easily than before, but I just think you need to ask a lot of questions really and not just think this is it, this miracle cure, I read it in the Daily Mail or whatever, you know, because not necessarily the case at all [laughs]. So mm I just think I’ll try and get somebody who’s authoritative or go to a good source of information and not just rely on the media entirely.

Go back to the main source or find out where the information came from and try and read it yourself and get somebody to explain it if they can, a doctor or somebody knowledgeable.

I then was able to go to the States to undertake what’s called Project Lead Training, which the course was actually free but I had to find funding for travel and a hotel. And we had, I belonged to a local research group that I joined around the same time. It was a new group that had been set up, I think there was Macmillan funding for the original three centres that set it up where there was a mix of, our group was a mix of professionals and people who’d been treated for cancer, not just breast but generic cancer. And the person who set our group up was [name], the research manager, she was able to find me funding for my travel costs to do that course. And it was the most amazing course, which, it goes into the science, the cell biology, research methodology. And you’re not a scientist in a week, but it does give you a much, much better idea of understanding the gist of what the scientists are trying to achieve. And it also was extremely exciting when you understand more about how cells work and what switches this on and switches that off. And so I did that training and then was able to enable other people to go off and do this training. But we decided that we needed to be able to do a similar training here in the UK and we shouldn’t have to go to the States. Weve got just as good, if not better, scientists here, and we should be able to do this here. And we also wanted greater freedom of dialogue with the scientists to be able to put a direct patient perspective into the research, and to be available to them for comment on protocols and new potential trials and that sort of thing.

So we set up our new group which is Independent Cancer Patient Voice, and the aim was to provide education, mentoring and support for people who had been treated for cancer and want to get more involved in the research, adding a patient perspective to that research. And weve been running workshops over one and two days. But we go to the academic centres around the UK, so that way we get a better geographic mix, but we also enable, it enables us to get a venue without charge, but we also get the teaching and it’s, the scientists at these centres have been extremely enthusiastic and very supportive.

I came to be involved in research, and it is not, I assure anybody, it was neither a knowledge of science, nor knowledge of research, and I’m sure my science teachers are all turning in their graves at the idea that I, because I knew nothing and was very, I think my last mark for O Levels was seventeen per cent. So I don’t think I even sat the exams. So I was not somebody who’d roll up. But, I was at a meeting where they asked, we were asked, or told that we had all this research that had built up and how do we tell patients about it. In my naivety, or some might say stupidity, I asked the question, “Well, why are you waiting now? Why didn’t you involve people earlier on? Because to tell people about things after it’s been done seems a bit like sort of, you know, bolting the stable door after the horse has bolted?” I then was tapped on the shoulder and somebody says, “Could I introduce you to somebody?” And that meant I went along to I’ll cut this story short I was invited along to a group who were talking about involving some patients in a committee they had in cancer research.

When I began, I began thinking that they wanted the patient voice at the table. They’d had some involvement in some research, but what I’d noticed they’d got when I looked or met some of the people, they were people who were , how can I say this? They were of their ilk. They wore similar hats or clothes. And by that I mean, it was a cancer patient, but they were a doctor, right? They were a cancer patient, but they, but they’d worked in research in the food industry. Now, there is nothing wrong with those voices, they are great because they understand the research, they understand, they’re great. But there isn’t a rawness to it and it made me realise.

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.

It’s something about the difference between, you know, understanding how your field and how research works and all of the things you take for granted and the gap that there is for people who don’t understand all of that who come in and trying to help people bridge that gap. Now I think, I mean I’ve seen people who are really, really good at that, you know, they can explain quite complicated things without being patronising but in a way that’s accessible; and at a level at whichbecause you don’t have to understand all the nitty gritty but you have to get the hang of why they’re doing it, the way they’re doing it or whatever. So theres something about sort of understanding if you like where that there is such a gap between what they understand and how they think about, you know, they being professional researchers, where they’re at and where the person coming in might be at.

And of course the person coming in we can be very different so some people might be, have quite a lot of skills or, you know, have relevant knowledge and information and some people might not have any of that. So theres something about thinking about that gap and I think it depends, it also depends a lot on what the job is so when you’re involved I think you can be doing hugely big range of different things and if, you know, so some of the ways that people are involved I don’t think you do need much induction or training or, from the researchers because what they’re asking you to do and how they ask you to do it comes more towards to you in your experience and it’s about sharing that and engaging in that sort of conversation which most people don’t need that much help to do. But if you’re going to, if the health professionals are going to ask people to do more complex, you know, say come in to steering group meetings or research team meetings and participate in those, or to collect data or help with qualitative analysis, you can’t seeusually do anything quantitative but those sorts of things, then you need different sorts of support and help to understand enough for that particular job.

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.