It’s stimulating. It allows me to use my skills. I’ve met some really interesting people. I’ve met some, made some quite good friends from it. You do feel as though you’re doing something valuable and particularly if you’re not doing a day job that’s important. You’re doing something valuable; you’re contributing to society in some way. And I suppose, at some level, you feel as though you’re kind of trying to exert some control over the future. Having had a disease over which you had no control and was very random, you are now in a position where, well OK, maybe by doing something around PPI I might get some control and help other people in the future. So it’s a combination of things, but I mean overall it’s very rewarding. I wouldn’t, I would have hated not to have done it, and I would hate to stop doing it, so yeah I would recommend it to anyone.

And when you first got involved what did you sort of think lay ahead of you?

Hadn’t a clue. I just knew that it wasn’t so much getting involved to add a patient perspective initially. And I suppose when I first got involved with the coalition and then with Breakthrough, it was more to do with improving services and treatments for patients, and it was a sort of progression from that into the actual research. And when I got involved in the research it was more to do with learning about it and the fascination rather than adding a patient perspective, that grew from it. And I think it’s been very inspiring, no, not inspiring, very motivational, realising how much it is appreciated by the researchers and how you can make a difference and it’s an important difference and it makes the research much more valuable. But it also means that the research is actually for patient benefit and that the patients who take part in the research are properly looked after.

Well I think an interesting thing is the fact that I’m on the Research for Patient Benefit [regional] panel. So, we read all these research bits and then we have to, and in the panel meeting you, there are three of us as lay assessors, and I have to lead on several of the projects, as a lay assessor. And, it’s all sorts of things, it’s not just mental health, it’s all sorts of things, so obviously the mental health ones come my way. And I think that is, there are lots of people around the table all academics and people. But they do pay the service users who are there for their time not a huge amount of money, but considering that often you have to read this amount of applications but, you know, better than nothing at all. And also, you do feel you’re influencing things because these are all people who are esteemed in their field if you like, and you have an equal footing with them. Your opinion is just as valid as all the others, and that is what is so important that if you do take part in things that you’re listened to, and, even if they disagree with you, which they do sometimes. At least you have a dialogue, you have a debate and I think that is the most important thing to me about this, is having a debate.

What are the things that you tend to look for as a service user when you see a research proposal?

Well, how are they using service users in the research? Are they just using them as subjects or have they got, have they before, had a little panel together to bring to, with service users and themselves to think about what the research proposals should be and so on? And so it’s, for me, I’m a bit fixated about money, and if they are being valued for their time, or even better if they are valued for their time by being a researcher, a co-researcher, a co-applicant on the bid as well. And how, sometimes people are put as co-applicants and you wonder if they even know they’re there as co-applicants. But if, to me it’s fairly obvious if people are being listened to and valued properly, or if they’re just there as a tokenistic thing.

I think the pros are obvious. I think the important thing is that patients make a difference, and if you feel as if you’re making a difference then, you will benefit from your input.

Making a difference is the important thing. Putting something back. From a personal point of view, you, when you feel engaged by these groups you feel as if your opinion is. You’re made to feel that your opinion is important. Then it has a massive impact on your self-esteem, and the role that you have in society, the fact that you can help to improve the treatment of patients within the NHS is a massive thing.

Other personal benefits, I mean, just the chance, there are some of the people that I’ve had a chance to meet as a result of my involvement is amazing and people from the Patient Carer Community, but also to rub shoulders with some very eminent clinicians and even politicians at times, has been, has been very, very good.

As I say, I’m accepted at different levels by different groups of people, but you would expect that anyway in a broad society, not everybody is going to be happy with what you do or what your input is.

But there have been times when I’ve walked out of meetings that I wished I never even bothered going near, but it’s been a minority of times, and even on those occasions it turns out afterwards, that, you know, your presence has made some difference to the meeting.

And has your experience of PPI changed how you feel about yourself?

I think perhaps initially it did because as it developed into something very positive I think I increased my confidence. And I suppose when you’re sitting on committees with people who are leaders in their field. In fact on the ethics committee I was on, the first multi-centre research ethics committee, the statistician there, I mean I had his book at home on my bookshelf. Wow I’m sitting next to a man whose book I use, you know [laughs]. And other, you know, names that I knew. And then finding that I could work with them, so that was very good for, and them listening and taking account. So, I suppose it built up my confidence. And I would say that applying for things like the General Medical Council work, I felt confident to do that because I was used to working with clinicians and well-qualified people, and used to accepting that if I’d done my homework and expressed myself that I would be listened to, and that I should be listened to. So I suppose it’s, I haven’t thought about it like that before, but yes, yeah. Because I haven’t had any negative experiences, you see, so it’s all been positive, so I suppose inevitably, unless I was completely arrogant it would have, it would have fed in to me feeling better about myself wouldn’t it? Yes.

In terms of your involvement in that, what do you think the benefits are for you being involved in your PPI group?

The main benefit I feel is that it gives me an opportunity to talk to people that have had cancer and they’re all positive and some carers come to the group – and then obviously understand what research is going on. I think were just a tiny proportion of all the research that’s going on and as I said I just like it because I can go up and they’re a really friendly bunch and we get on really well, and it’s not doom and gloom when everybody’s talking about their cancer.

Oh it’s been good, I enjoy it. I see much more and I get much more back than I ever give. The number of people that I’ve met, other PPI reps throughout the UK is just, is great and gleaning their experience, I mean that’s, you know, I pick peoples brains and they’re always very willing to let them be picked and that the research that’s happening, that has just blown my mind.

What has really blown my mind too is doing lab tours and seeing the months and years that those scientists put in at looking at a little thing that size of cells, looking for something, at something and perhaps after years their question isn’t answered, it’s shown not to be an answer. And I just admire their passion for what they’re doing. So I admire, I’ve come to admire the researchers because I’m it’s more than just like a job, I’ve come to see, to the majority of them, they are, they’re passionate about what they do and why they do it, and I would just like to support them in that and that’s what I would say about PPI. I enjoy it; I mean why would you be doing something you didn’t enjoy? Do you know what I mean? [Laughs].

And so yeah I enjoy it immensely, I would say to anybody to, to think about getting involved in research, it’s not frightening, it’s a bit off-putting at the beginning because you’re hearing all the acronyms and all the terminology and it’s like a different, you know, a different language but eventually you come to understand enough of the language to be able to understand what’s going on, and I would say whoever you are, you’ve something to give in PPI because you are unique as a person and you bring your skills, your life skills and all our life skills are different and that’s why it’s important to have a whole range of people involved in PPI so that benefits research and benefits people at the other end of the scale. So yeah don’t ask me that question because I’m very passionate about it [laughs], I’m surprised how passionate I am about it.

Really?

If somebody had said to me three years ago, you know, when I said oh yes to this whatever this PPI was I would have, Iyes, totally, totally thrown myself even at the passion and the understanding that has come about, and you might think that’s very strange for somebody who’s worked in the NHS all these years, but I would not have had the, or a new research happen, but not the understanding of the importance the benefit, how nothing moves forward without it or nothing will change without it. Yeah so I would invite everybody put your toe in and if you feel you want to put two toes in the water of research that’s alright. If you want to put, immerse yourself in it, that’s also OK but you’ll find that people, there are PPI leads, there are researchers, there are other PPI people who are willing to share what, the knowledge that they’ve got already and that’s a great support mechanism, and you do feel as though you’re doing, let’s be honest, you’re doing something of value. You’d be wrong not to acknowledge that, that you get something back from doing that yeah.

I mean, I do think that is one thing if you get involved in one project there is a slight addiction to it. You get involved in one and then before you know it theres three, and you start to get training offered to you, and it would be nice to see that encouraged. So that people who get involved right at the start know that if they want to take it further; if they enjoy what they’re doing, there is somewhere that they can go afterwards and that’s part of the appreciation you know. It makes it feel like you’re appreciating the effort that people are putting in so, yeah.

It’s like reading the first chapter of a really good book and you just, you have to read the next chapter and then, before you know it, you’re half way through, and if somebody’s ripped out the last page then that’s the end of your life. And yeah, it does come to that kind of feeling. You just have – somebody tells you, “Weve got this research project going on,” and you know they don’t even have to mention about whether they want people to be involved. But, just hearing about somebody elses research and people are always so passionate about their research, and you do get drawn in by that passion and excitement and you want to find out; you want to help; you want to know; you want to be in there with your hands dirty finding out, yeah.

That was a nice analogy about the last page being ripped out of the book because, that’s sort of like when you’re not given the publications or the feedback or the outcomes from it.

Yeah, yeah that’s it; you never know what’s happened at the end, yeah. Actually that yeah, that is quite annoying and even, you know, I don’t actually think I’ve ever had anything come back to me in terms of published output from anything that I have done.

Actually yeah, I must chase up a few of those and see if they would, but.

And do you think that’s what you’ll do, you’ll contact them to say?

I think I will actually, having spoken to you now. I mean this has been very useful for me as well. I mean, I think it’s pretty obvious that I’m chronically involved in PPI [laughs], I couldn’t give it up if I was given treatment for it. And I think I – it’s given me a lot to think about, it really has; and a lot of assumptions that I had made about my own involvement which I think it might be useful to challenge as well. Yes, I think I will go back to all of those people I’ve worked with and all of those people who have sent me things to read and say, “I did this for you five years ago, what happened?” Because, it would be nice to find out yeah. Thank you, yeah [laughs].

Well at a personal level I’ve gained a lot from it. I’ve gained knowledge of things which directly bear upon our family health. I have gained satisfaction and enjoyment of working with some very bright people and the sort of reward of feeling that what I’ve done is actually been useful and, I mean there are all sorts of buzz words like, ‘esteem’ and ‘self-worth’ and that sort of thing, but when you actually stop working, if you retire, then, and you step back from that, it may be that, you know, if you stopped working you would be able to, I don’t know, go and take up watercolour painting or you go and travel the world or something like that. But if you retire at the end of a long career then, and maybe if your physical opportunities are limited in some way, and ours were limited by my wifes orthopaedic problems, then a lot of the drive force of your life has suddenly been removed from you. And your self-regard and intellectual stimulation, all of those things, are suddenly taken away and the PPI involvement is directly relevant to our family. It’s intellectually stimulating and it’s good to work with good people, it’s good to have the respect of good people, that’s very satisfying. And I suppose the icing on the cake would be if in five years’ time, one of these guys came back to me and said, “You know that project that we did? Well it’s really, really worked.” I would think that was great.

It’s, the people I’ve met and the contacts I’ve made, the friends I’ve made oh yeah it’s more than worth, that’s more than worth the time that’s spent, you know, doing your solitary reading and catching up, you know, the value and the contacts and people and friendships and everything far outweighs any of the disadvantages if you want to put it that way. Oh no, yeah I have no regrets in doing it, plus the fact you know, in a selfish way, it’s given me an interest as well, you know because, you know, it was a case of when I wasn’t able to work again, what am I going to do you know. I need to find something to do, I’d worked all my life and I know Helen has never said it but I’m sure she was maybe thinking, ‘Well, you know, hes worked all his life, what’s he going to do now you know?’ And I, I couldn’t really, well I enjoy having a, a social drink, I couldn’t see me spending all my time, every day going between pub and bookies, you know. If I could afford it, anyway, so yeah theres been a lot of benefits for me, for me personally yeah.

Did you ever think this was what you’d be doing in our life?

Oh absolutely not, it’s something I’d never ever dreamed of, of anything like this so it was a total life change, you know, after , after having lung cancer, you know, a different direction totally. You know, grateful that I was still alive in the first instance and totally grateful as well that I was still able to get involved in something like cancer research. Yeah it’s been good. I’ve enjoyed it.

I get a great deal of self-confidence; I get a get a great deal of knowledge; I relate to people; it keeps my brain alive, one of the many things which keeps you living for a long time yeah. It’s a relationship with people, relationship with the study and looking at it and thinking about it and reading around it, yeah that’s the recompense for me; I mean I’m not bothered about the money.

And did you ever think that you would be doing this in your retirement?

No, no. I think my life has completely opened out since I retired. In fact I think this is about the best part of my life actually.

Really?

Yeah.

Why’s that?

Well, I joined, I joined the Air Force at sixteen, became a State Registered Nurse. I’ve never really liked nursing to be perfectly honest with you. Became a teacher. Perfectly honest with you, I’ve never really liked teaching; I couldn’t wait to leave a classroom. I should have been a librarian or an archivist. I’m an introvert so I don’t relate well to groups and people. You know, stick me in an archive filing documents and, you know, shelving books and I’d be perfectly happy. I was in the wrong job. And this has really been something I’ve really liked doing. I felt at home doing it. And I felt people appreciate it as well and it’s lovely to feel appreciated, it really does. If I was paid you wouldn’t get that appreciation, you wouldn’t get that, I don’t wallow in the gratitude but it’s nice for people to think, ‘Well thanks Dave, you’re doing that and that’s a good job well done. And that goes a long way.

Actually I’ve probably got more confidence. And also you’d like to think that you always just say it as it is but I actually think I’ve got to the point now where I feel I just say it as I see it, and if I think actually that’s not a good piece of research, I’ll just say it. And then, and I actually feel really passionately that I actually owe that to families, so whereas before you might have not wanted to offend somebody perhaps or not, and I don’t mean that I’ll just knock every piece of research that comes out, but I will always just be as honest as I can. And I’ve probably got more confidence to actually say it rather than think it. And what I might have done before is maybe emailed after or something, but now I think I don’t mind actually having debates in meetings or discussions at the time and trying to just do it always constructively, but probably a bit more confidence at doing that yeah.

I just went on a time management course last week and in the course the speaker, the lecturer was talking about the rocks in your jar and what are the important things. So really you would expect my important, one of my rocks to be my career. And I was thinking actually the confidence that I’ve gained from doing all this work should be translated into my career, but that hasn’t happened yet. So I keep thinking that will be and maybe you don’t have the time if you’re on the time management course to. The rocks that you put in are your children; your juggling; your whole life it’s whatever you choose to make your rocks. So no, I do think I’m actually missing a career rock in that jar but , so I’d have thought the confidence I gained would have helped me to have worked to find a way to a career. Because actually there is no career development in being a consumer rep or doing PPI work. There is if you’re the employed person doing the, like for example, the MCRN administrators probably or the people who run the MCRN [Medicines for Children Research Network] probably with them this career. So for them developing PPI probably is a career profession for them. But actually the PPI members I don’t think theres any career progression from that role.

But I suppose for me the main barrier in the first place was probably just , you know, sort of, if you like, rebuilding my confidence and, you know, I don’t think some of the things that I did later on; if I’d been asked, you know, somebody had said, “Would you like to do that?” right when I’d if I was very close to being really ill and I think, you know, feeling the world had ended, I would never have done that. So it’s something about, you know, things have got to be interesting and just about imaginable that you can take that step. You know and then I think it’s a journey and I think you set off on an unknown journey and you end up somewhere you didn’t expect.

And what have the sort of highlights of it been or what have you got from it or has benefited you?

Oh goodness. Well I think, I mean I think I’ve got lots of personal benefits from it. I mean in a way I’ve got a new career out of doing this. I’ve turned, being a mental health service user into a career option which is rather odd. So yes, you know, so I’ve, well I think in the first place I, you know, it really supported my recovery actually, you know, my sense of, you know, it changed or helped to repair my sense of who I was and my , you know, helped me to believe that I had skills again and that I could do things and you know, so it had a lot of very personal benefits I think at the beginning and gave me something to do with my time that was more interesting than watching daytime television or you know, whatever. So yeah, you know so I think there were a lot of personal benefits and, you know, I’ve had two full-time jobs on the back of this and now I’m doing a PhD which is, I get funding for on the back of this you know.

I think when I first got involved with stroke research, as I said, earlier it was because I wanted to improve physically, but that very slowly changed into being involved for my cognitive recovery and my psychological recovery. Things that I didn’t understand or appreciate how much had changed as a consequence of my stroke and I’m pretty sure that being involved in the PPI element of the work that I do has helped me to overcome those psychological problems and neuroplasticity rocks [laughs].

And in what ways do you think that the PPI has actually helped?

I think PPI has given me a focus something that as a teacher, and I was quite willing to go the extra mile to support my students, and so now all I’ve done is swapped my sixteen and seventeen year old young people for a wider variety of ages and helped them, you know, I can use all of the skills that I did have as a teacher to support people who have had strokes or acquired brain injuries, to help them to understand what’s happened to them which in turn, once they’ve embraced that reality they can then start to move on themselves and it’s just so rewarding to see people blossom once they’ve grasped the nettle. And I’m quite sure that you, you can’t improve until you’ve done that and nobody is going to wave a magic wand for you to get better, you’ve got to do most of it yourself and you can make your own luck which is what PPI does and what it’s done for me, you know, it really has created an environment where I can flourish in a completely different way, a way that I would never have believed possible, just four years ago.

They finally diagnosed it, he was pretty bad, they put him on a transplant list and I was completely devastated. I envisaged a man in a wheelchair or, you know, having a heart transplant or dying because they couldn’t find a heart but after fifteen years he recovered on the medication. Hes now on a very small maintenance dose of beta-blocker and something else for the rhythm. But generally hes gone on a long walk, started on Monday with friends along a canal Liverpool and hes been, he walked right across France [laughs] in four years in chunks and he can do twenty miles a day or more, so I think you could say he has recovered. I didn’t think it was possible so that’s been a bonus really mm.

I suppose those things in life kind of interrupt you know the PPI thing and

Yeah, yeah. In a way it, I was able to cope with that in a strange sort of way because I was Chairman at the time for, and I went on for another two years and I only missed one meeting. It helped me cope because it kind of took me away from it sometimes, so it wasn’t just always the full weight of his illness. I could escape into something that was equally absorbing so that I somehow managed to cope with it better. I can’t explain why but it, if I just didn’t have anything else I think I would have been really bowed down. I don’t think I would have managed at all. So yeah it’s been an amazing, amazing life, but I really think it is, it has been good for me doing that. I never envisaged doing it and it’s good that we can do it, you know.

And has your involvement in PPI changed you as a patient over the years?

Changed me as patient, and other patients. A lot of what we put together in this strange world of involvement or even worse, PPI. And I say worse because too often I see people say they’ve got a PPI strategy or a PPI plan, which is about involving people in research. But really it’s about better research and it’s about making a difference to peoples lives, and too often we forget that last part. But, theres another element that doesn’t get touched into, involvement that changes peoples lives because of the involvement not of the research. And it’s something I’m having a growing interest in. And if anybody who’s watching this, please let us know more and more about this. But I know I’m a better patient, I’m a better person because getting involved has made me look at my health. I now am a healthier person because I now am interested in what the latest research is, not just in my head and neck. So, I will read stories that help me about swallowing or saliva glands and speaking when you can’t have enough breath. So, I’m interested in those and I now know how to read some of those documents and find out where they are because they’re not often things that you just immediately turn to.

They’ve changed me in, and because I’m more actively involved with the Health Service I know about things like, and I’m laughing because I’m in the middle of this now, it’s something called From Couch to Potato no that’s not really what it is from couch to 5K, where I’ve now taken up running, and I’m taking up running on an evidence based programme that helps me to run 5K. And it’s an evidence based programme because when I tried it before I gave up because I tried too hard and now I’m doing it. It gives me breaks. Its evidence, it’s brilliant. But it’s helped me fundamentally as a cancer patient because when I’m out there and I meet somebody else who’s a cancer patient my cousin was diagnosed. I’m giving him advice, not on the research, but I’m saying, “Ask about research that’s going on. Ask about whether your clinician is research focused.” Because when I go to a doctor, I don’t want to know that they’re giving me the research that was years old.

I do feel very much at a crossroads at the moment, in that, I’ve done so much of this stuff in my own time as a volunteer, as a lay person. And I’m beginning to feel – this sounds silly I’m beginning to feel over qualified to be a lay person. I’m beginning to lose my lay perspective I think, on a lot of these issues. And it does worry me that I’m going to keep on putting myself forward for things, and sooner or later I’m actually not going to be, honestly, a lay person anymore. Which I don’t know if that’s a good thing or a bad thing, that I’m more informed any more. But, what I really want to do is move into working in this area. I mean it’s lovely doing it as a volunteer, it really is. You get such a buzz out of doing all of this and helping and, you know, what you say if people can prise apart sentences and find a nugget of sense in half of it what you say might be useful to somebody at some point but, that’s fantastic. That’s so exciting but, sooner or later you have to pay the milk bill or, you know, you have to put tyres on the car or something, and I really do need to get a job. So this is – I have never worked in anything that has excited me more than this, doing this as a volunteer. So if I could manage to get a job doing any of this, whether it be clinical trial administration or, you know, regular healthcare research or something like that. It would be brilliant but, I’m at that crossroads where I’ve only recently come to that kind of understanding of what I want to do. So, I haven’t been brave enough yet, to actually go and ask people whether I’ve got a hope in hell of doing any of it. But, I think going and talking to them at the CLAHRC is probably going to be on my list of things to do certainly, yes.