And actually Cancer Research UK which is really interesting because they had a I thought it was really interesting, I wish I’d kept it but they had a ‘Come for Cake so engage public and patient and public involvement but there was free cake. So to get people to come along, which is just a bit of a shame that they had to make some cakes. And then I actually went along just to see what they were doing, but it was a really good patient involvement person from Cancer Research UK, she was new in post. But what she had was a way that, so Cancer Research UK is an organisation how they could get involved with public involvement. So some things they had, for example, were take part in a 5K run and do a talk at the end of the 5K run; or help at social media but they had, so again it’s trying to connect the researchers with patient and public involvement, which actually I thought was a different view rather than trying to connect the public with science; it’s trying to connect science with the public. And the people involved with science trying to make them see the patient on the 5K run and to have the two together at the end, I thought that was quite a clever idea yeah.

Oh it’s essential, it is. It’s , it is, nowadays it is and to do good research and don’t get me wrong, theres lots of basic science work going on that actually it’s hard to even, so I think that research is also really important. But when you come to actual research on patients I think it’s really important that you have patients helping you to do that well and I think you’re going to get better recruitment because the research will be better designed; it’ll have better relevance to the patient. And there actually is some evidence; there has been some work done on what value there is in adding PPI to research. So I think, and also we can help disseminate the results of the study so by linking the charities and by making relationships with charities, then the results are just disseminated much better. People are much more research aware and I can’t see anything other than positive benefits of PPI.

I think what they showed is that there needs to be lots more work to be done on actually assessing the value of PPI. But there, what it has shown is that the study design is more relevant to the research and also, I believe, that the information sheets are better written and better understood from a lay perspective if you involve patients with the writing of the lay reviews.

What do you see for the future? What is next for research and PPI?

Hopefully through social media. I think the future is probably going to be social media and I think much more of patients viewed as partners. I’d really love to see research and patient experience become more integral. So patient satisfaction surveys don’t mention research, you know, they’re just almost seen as two separate things and I’d love to see research as expected to be part of your clinical practice, clinical care. I think oncology is ahead of the rest of the specialities, I think it’s probably, yeah I’d say it’s ten years ahead of , of some other areas. So I would like to see research as viewed as part of your clinical care; good quality research; patients involved in shaping what the research questions are; funding that patients could take, could lead in some research projects and that the results are shared really widely and that theres good access for everybody to find out what’s happening in trials and in what other results and just much more easy access of accurate information.

And apart, well what are the costs of it, of taking part in PPI?

Well weve touched on financial costs. I guess theres always time costs of doing it. A lot of, and it’s whether people work, whatever people can fit it in to their time. I work in the evenings so I come home and I’ll put my children to bed and then I’ll turn on the computer and Ill often work really late doing PPI things. So you’d have to be really interested and you’d have to care about what you do otherwise you probably wouldn’t do it, but, so I don’t see that. I see it as a time cost, but I see it as a good use of my time if it’s a more positive way to put it. And then maybe, I’m trying to think if there are emotional costs, perhaps for some people there might be. I haven’t felt any personally but there might be for some people.

I was going to ask you that about whether or not the sort of things you look at ever sparked off any sort of emotional reaction?

No because generally I think research is what gives me hope for the future so therefore I think it’s really important that research happens. So I actually feel that that committee is something that actually makes me feel more positive about the condition than day-to-day going to hospital appointments and everything else where you aren’t aware maybe of what work is going on in the background. So for me I’ve only seen it as a good thing to be part of.

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 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.

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.

So what have I done? So actually I’ve done quite a lot but it’s over a long time so I’ll just try recap it. Actually I have an Excel spread sheet of everything I’ve done so we just, I just try and keep a record of it. So I’m on a couple of trial steering committees and I’ve, what’s been nice is, I’ve been on those since the start of the studies, so that’s been really great to be involved and I’m still involved with those. I’ve commented on loads and loads of trial protocols and trial information sheets, and I’ve helped to write some of the trial information sheets, or review I should say, rather than helping to write, but reviewing them at a very early stage. And actually it’s very hard to write. I’ve, myself and another consumer have done our own small piece of work where weve sent out a question to, well we actually, it’s actually reached two hundred parents, but asking parents what are their top three concerns with their child, condition and care, just a scoping exercise to try and then translate their concerns into research priorities and that’s being written up at the minute. I’ve done an editorial on the importance of consumer involvement for research that’s not really on what I’ve done there. And then I guess it’s just looking at trial proposals from a very early stage and just being involved with the initial trial design and helping to shape that trial design from the very beginning. And that’s been really interesting when you’ve got right in from the first teleconference about a proposed piece of research. And theres lots of really good work that’s happening. And it’s been really nice to actually to have had an input to that.

I think what you have to have if you can is a really strong consumer support for each other. And I think were really I keep saying how lucky we are, but I think weve worked really well and really hard together to make sure that we have that. So I think parents and consumers need time to meet together and what I’ve done, so weve just recruited two new parents to the committee that I’m on, so I’ve set up a teleconference with them where the three of us have just had a chat and just talked a little about the role. And then I’ve actually met one of them separately to just actually get to know the person and for them to then have the confidence to say when they don’t understand a trial design or a trial piece. But again I still think each person is just giving their honest view.

Again social media theres a couple of groups on LinkedIn where you can see what’s happening in other patient and public involvement areas. But actually that’s one thing where the Medicines for Children’s Research Network has possibly not had enough funding or structure to organise. But, for example, I’m very connected with the rheumatology group but theres probably thirteen or fourteen other groups and it would be really interesting to know how their patient and public involvement role is developed and how they’ve got on and what they’ve done in their group. And actually I think we had one event in the five years where we all met up but it would be quite nice to even have an annual meeting or an annual training day or something else. But I suspect there just isn’t funding for that, which is a shame because actually that would be really valuable in terms of where have we got to and where are we going and how do we get there. And again just that sharing experiences and sharing what’s worked well, but I suspect there aren’t funds for that which is why it hasn’t happened.

And I should also add, there are times when you will not be in agreement and you will, so it’s not always great, you know it’s not always satisfying. There are times when you don’t agree or when you feel frustrated, so I should also, so instead of thinking it’s all wonderful all the time, there are definitely times when you feel disheartened, dissatisfied and disappointed in the outcomes of a meeting or in some of the discussions at a meeting. So you do, it’s not always wonderful and positive all the time, but it’s still finding the way to work through those and challenging or, yeah, so challenging or channelling those problems into finding a way forward together as a group. But in, so in terms of things that I don’t think I’d have ever challenged people before who are in the medical profession in rheumatology. Yeah, so I probably wouldn’t have done that. And I probably wouldn’t have, I was already chairing the SNAC group so I can’t say that PPI has led me to doing that, but I, yes so I wouldn’t have spoken at a conference before. Yeah that’s probably it.

And you know when things are frustrating and you’re disappointed and so on what are the kinds of things that spark that?

Oh probably where people don’t, probably where committee members don’t understand what PPI actually is and they see it as a tick box exercise or it’s something they have to do rather than something they actually value.

That would probably be quite frustrating or I think I talked about before, when people say about using’ patients for research. I just find that disappointing and it’s good people just think about involving’ patients or engaging’ patients. But that word using’, I just dislike it yeah.

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

And what’s it like taking part in teleconferences?

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

I think there, yeah theres an attendance fee so you can actually, with the Medicines for Children, so you can actually claim an attendance fee. I think it’s difficult if you so that’s for the face to face meetings, which are over two days. And then for other meetings I think it’s difficult because it’s often a different person who’s arranged the meeting and therefore they probably don’t have in their budget consumer’s expenses other than their travel and their expenses rather than their time. So it’s a difficult one. And I think most consumers probably don’t mind giving time, but can’t afford to have any expenses and I think time over two days is different to time over an hour in a telephone call, but that’s my view.

And do you think that people should be paid for doing PPI?

I think it’s really difficult. It’s, but I think there seems to be something about being paid and putting value on their role by being paid. I don’t really know what’s the best way forward for that because it’s nice to think that you do it because you really feel passionately about the role, but yet you’re probably the only person on the committee who it’s not your job and you’re there for it’s quite nice how the Medicines for Children Research Network do it by giving you an attendance fee when you go to a meeting, especially when you’ve taken annual leave to go to a meeting because I don’t think anybody else would take annual leave to go there. So, so yes you could argue that yes they should, but it shouldn’t be the incentive to do the role if that makes sense?

The role shouldn’t be about the money should be about the person doing it. I think it will change. I think, generally, people will be paid more and more and therell be an expectation that people are paid and that’s probably right. I was quite lucky, I could probably afford to do it just, not easily but I probably could afford to go and not need that income or not mind taking an annual leave day.

When I look at any piece of work I think of the patient, the Mum or the Dad at the clinic with their child and I. So again it’s always , so my only work is in paediatrics so I think of them and the Mums I know, the Dads I know, sitting at a clinic being given that information sheet and how they would feel when they’re , straight away their instincts when they’re given that sheet. And then I think about the trial design. It’s quite helpful to have a research background so I, it definitely helps me when I’m reading it because you understand that the trial design, whether it’s a phase three or four and how the trial is actually set out. And then it’s a difficult one because often theres a placebo arm, which actually is important but, and I’ll understand that from a research background. But then it’s trying to find the softener I guess for the patient that might get the placebo in the study. But I always think of the person being given the information about the study and what that study actually will mean to them, and that’s the only way I can do it.