Does it have a sort of an emotional cost, the PPI for you? What would you say?

Yes. Because obviouslyI’ve experienced cancer, obviously it has its afflictions and obviously kind of having to kind of discuss it so objectively, some of the time, can be quite, yeah quite hard. But, at the same time, I think kind of benefits outweigh any negatives and you’re there to kind of help out and improve research and kind of make less emotional concerns for patients in the future. So I think that kind of outweighs everything.

As I say all this is up in the air, because my long-term health is in doubt. So I’ve decided not to study medicine, but originally, yeah, medicine and kind of still having this kind of patient and public kind of backdrop probably. I think they’ve complemented each other quite well.

Do you think the involvement has made it some way, made you change how you think about yourself?

Yeah, I’ve always wanted to kind of help others and become a doctor, but doing it kind of indirectly through research… it’s a different way of doing it because the stuff is not personal one-to-one helping another person, but it’s still a way of helping others, and helping others probably on a kind of grander scale and helping more people you see. So I think yes, that’s helped me a lot.

What have you particularly enjoyed about taking part over the last six months? What have been the kind of highlights of the things you’ve really enjoyed or perhaps you’re naturally good at?

I just like the kind of social interaction with all the different people you get to meet and then, the main thing is that it’s for a kind of good cause, and you feel like you’re making a difference and that’s the other important thing.

I’ve had ME for sixteen years and my health goes up and down. I requested the date you came here because that saved me, not just the energy of two hours of driving but the energy of having to think around timings, to fit with the school run, finding somewhere to park, having the right change in case theres parking meters, whatever. So having a long term condition is tiring in its own right and then finding the time to contribute can be difficult or it can be the opposite, it can be easy. So a lot of my work comes to me via an email. Well because I have a long term condition and I don’t go out to work and I work from home, and because I work from home part-time, I can deal with the PPI requests that come into me very quickly and efficaciously and I know that I’m well respected for that because I turn things round on the day they come out. I would rather deal with it straight away because it will take me two minutes to read it or five minutes or ten minutes to read it and in fact, if I, if I forget to deal with it on the day because I really am too tired or I’m; it’s a day I’ve allocated to full-time to my other work, often I can forget about it completely and I need a prod and then when I’m prodded I respond immediately. So I tend to find that my condition doesn’t help on things like taking the time to go for training because that would then tire me for the rest of the week. If I had to drive to Manchester for a training day I might have to go the day before, I can’t often just travel on the day. Most people might jump on a train at six thirty in the morning to do a meeting, I need to budget extra time into any physical transaction I have. So if I choose to attend the meeting in London at ten o’clock till four o’clock, I might make sure I wasn’t doing something the next day.

Today I’m having a quiet day at home because yesterday I went out to work for the day. So I have to budget my time, I would, I need plenty of notice because of my condition so being given notice at something three months away I would then not book anything else in the week that I went to that meeting, not because I could only do one meeting but I know that other things will come along that I’ll need to put in that week, but I wouldn’t plan to do two big things in a week. So I find that my long term condition which is basically one that , is one of energy management, if you’re managing packets of energy, that my involvement with this would require me not to book anything else when I have involvement, if it’s a major piece of involvement. If it’s just, as I say, incoming emails, my condition’s great, I can sit there and quickly turn something around.

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.

I feel sometimes you travel so far and coming back you do feel tired especially as you get older as well. I feel it’s all worthwhile but at the end of the day I’m thinking, ‘Do they really appreciate what you do? Are you there because they have to have you there or are you there because they want you to be there?’ And I think to myself sometimes, you know, you do put yourself out, you do, there is a lot of travelling and it’s your expense until you get your expenses paid, which is usually about a month or perhaps a bit longer and it’s coming out of your pocket. You know it’s not like they give you your expenses there and then on the day. They don’t do that, so sometimes it can be a hefty chunk coming out of your pocket, especially if you’re doing two or three journeys in a month and yeah. Because like I say sometimes you don’t, you don’t get paid on the day, you get paid monthly or five/six weeks. So if you’re doing that three times a month it’s quite a, and the train, cost of train travel, it’s quite a lot going out, yeah.

I’ve had one difficulty with payment. And, I did a study, I finished doing the study, reading and commenting on it on 23rd January, were now 29th July, sorry 29th May and I’ve still not been paid. And I have, I did email the person in question to bring it to his attention and he did say payment would be due in a fortnight, which was about eight weeks ago and I’ve still not been paid. So up to press I’ve not done any more studies for that organisation as yet until I get paid from the 29th January, which I’m not happy about this because I was interested in the last study that came through. They wanted me to review but I declined but I’ve not been paid so left it at that.

And is it the principle of it?

It’s the principle. It’s not the, you know it not’s the money, it’s not the money, it’s the principle. Were doing this in our own time and it does take our time and it would be nice to be appreciated now, you know.

There are always costs. There are financial costs and there are also other sacrifices that people have to make. I’m very lucky. I had a good job and I have put money to one side, and I don’t have children to bring up or watch over, so some of the sacrifices and the costs that other people have, I don’t. PPI is usually well reimbursed and your travel expenses and other expenses are covered for you, but nevertheless, we all have to give up time; we may have to take time off work, maybe our annual leave entitlement. There will always be additional travel costs that you don’t expect. Things like telephone bills, printing paper, cartridges for a printer all that kind of thing, you will incur, it will cost money. Sooner or later you’re going to have to buy extra books to improve your reading, or at least join a local library and pay the bus fare to the library to take the books out. There are always little things, but they are little and if you’re lucky, you do get the chance to go to big conferences, so you can always stock up on biros and post-it notes theres a trade-off.

And that’s one of the big reasons why I’ve become so passionate about research because I realise that somebody, all those years ago, said yes. Said yes to those chemo drugs, said yes to the dose of radiotherapy in a clinical trial, and said yes to taking that drug that I took this morning, and I’ve just come to admire those people who have said yes to clinical trials and I think they’re very special. And if I could thank them all for all over the years I would but they’ve meant a lot to me because they’ve got me where I am today.

And so is there an element of giving back then in your sort of participation in PPI?

Yeah very much giving back, giving back for the treatment that I got and the care that I received, and anything I give in PPI is nothing to what I get back out of being part of it and that’s being very honest. But certainly I just see it as being a partner with researchers and helping to improve treatments and quality of life for other patients coming out of this right from the initial bit of what’s done in the lab, right through to what it means in changing services and treatment, and my part might be very small and that but I think you bring who you are to it bring your experience of being a patient and that’s unique round that table. Everyone us has been a patient or, or been a carer, and the experience weve had of the impact of cancer and treatment and diagnosis on our lives, has something to say around that table with researchers as partners. I don’t become a researcher, I don’t become a research doctor or a nurse, I don’t become a scientist but I bring something unique to the research and that has been exciting for me.

It would make a difference. I would feel, I would feel as a paid employee and I had to do what the, what the hospital wanted me to do as well. But now I’m a free agent and saying what I want to say within reason. I can make what suggestions I can say. I can say things which the members of staff would not want to say and what are they going to do? Sack me? Well yeah right, big deal, no problem.

So you’re not answerable to anybody?

I’m not answerable to anybody.

That’s give you a bit of freedom.

It’s, what is it, responsibility without something or other? Responsibility without accountability yeah, but you have to be careful, you can’t, you have to be professional about it.

How does it feel when you know that, you know you’re at these meetings and everybody else there who isn’t a citizen researcher is being paid for the work that they’d doing and you’re not? You know the professors and the doctors and so on, does have that any impact on you?

Not in the slightest. What I get out of the studies is much more than payment, it’s much more than payment.

And what do you get out of them?

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.

The argument is that if you’re of value you’re round a table then, you know, that should be shown. I don’t personally believe that shows my value because somebody pays me. I think my value round a table is the fact that you’ve; you have earned the right to be respected and have a voice round that table. So I don’t feel on a different par to doctors or scientists because they’re getting pennies for being there, pounds probably. I don’t feel that but not everybody in PPI would agree with me. I would have to say most people in Northern Ireland, PPI reps would agree with me, other PPI reps if they heard this would probably be horrified at me but , but that’s to say I don’t feel that it undervalues me or undermines me or says you’re not of value.

But maybe that’s a personal thing.

Yeah

And I couldn’t really speak for people, that would be dishonest in being able to say this is what they all think, it’s personal.

Yeah, no and I think that’s a very important point isn’t it because value and money are two different things.

They are different.

But they can often be confused.

But yes and I think, I think that is yes, and I probably do think, you know, that of the number of hours that sometimes you put in thinking they’re laughing in the Cancer Unit saying, you’d get Securicor if we had to pay you, you know. But I don’t feel I’m being misused or abused if you know what I mean because I have the right to say no.

You know the porters do laugh and say, “I’d thought you’d retired”. I said, “I have because nobody pays me anymore”. But in saying that I do have the right to say, “Well no I’m doing that, you know, I do have other things that I do as well.”

I mean if there are kind of sort of a little bit of financial reward I’d, yes you know I mean I want to work, I want to still make money to pay bills you know, so every little helps. But at the end of the day if I’m committed and I want to get involved in it. And if you get a little bit of reward through payments that’s fine, but my motive is not financial yeah, and that’s me yeah. There may be others saying, “Well I’m doing it because I’m getting ten quid an hour,” as an example. I think being, volunteering for it and doing it off your own interest has that element of independence. Once you get paid for it yeah, then to some extent you’re restricted yeah, but if you agree to do a little bit of work and there is a payment for it that’s fine yeah, but to me it’s not about money, yeah.

I don’t know that necessarily I’ve derived a benefit of kind as a result of meeting all these various people because ultimately I’ll stand by what I’m able to offer in an open, open process. Fine if you don’t like me because I am who I am I’m, you know, not in your face like but I don’t take, I don’t take crap. You know I can find another opportunity or find somebody that doesn’t know me then I have to kind of like steady things down. No, if I’ve got a particular, I don’t know, if I can sell a particular skill or experience that might be of benefit to an academic or researcher that’s fine, then theres a marriage of convenience. Show me the money and I’ll give you my time. You know that’s how it is with a lot of people, I’m just being upfront. You know when we had a public issue people wanted to know what they would get paid. Now I don’t know where they got the idea from but I do, you know, I don’t expect things that are open like going to a seminar, a conference or training that you get paid for. That I understand, some people think that you should.

You know it’s not, I know that research staff or whatever they will get paid but then they’ve got a contract. If you haven’t got an honorary contract, don’t expect something for nothing. I live by that, but then if I’m kind of like preparing a day’s training on equality diversity for the mental health Trust, I know that this half a day is a hundred and twenty; if it’s a full day it’s £240 for the day. Done that very few times because I’m sure they can’t afford to keep doing that all the time but you’ve got levels of payment. What is important with peoples involvement, not only with the payment, although that helps so you’re not at least out of pocket, is how you will be able to perform the task, be it voluntary, and what will that enable? When we had that meeting we couldn’t actually say what we could offer them because, like I said, were here today whether or not this, which we will because nobody else put a bid in.

One of the things that keeps people in, and I think this applies to me as well as to other people, is feeling that you are being taken seriously. Not just the people who are responding and saying, “Yeah,” in a meeting, but overall this is seen as a, you know, a kind of, well a serious important thing to be doing, that value is given to it and one of the ways in which we measure that value is actually are you giving us good admin support, getting us information in time and in a way we can actually access? Because our needs might be quite different from someone who’s sitting in a very highly IT sophisticated environment in a university research lab, for instance. And are you acknowledging our time? Some people pay honoraria or attendance allowances; language varies and some people don’t.

My fear is that some of that might be eroded and if people really want more diversity, which everyones saying they want you’re really going to knock that on the head if you don’t continue to put resources into it. You know, it makes it back to being a luxury for the retired professional who looking for something interesting, you know, challenging to do. And that’s, we have to be more than that and wider than that. A couple of the groups I’m involved with have done great guns recently in bringing in people who aren’t, well people who aren’t like me, but we need ever so much more of that. We need younger people as well as people who are from ethnically diverse or less well educated, less starting from a different perspective or understanding of what research is. But that doesn’t mean that they’re not able to contribute; it means they’ll have very different things to contribute and weve really got to work to support that kind of contribution and make sure it can happen.

And that does take money I think pretending that it doesn’t is just fanciful.

I think payment is an important point. And I think, I think I’ll say two things about payments. Everybody around the table are supposed to be equal contributors. If everybody around the table except one is getting paid to be there, that isn’t right. Hence, now more and more PPIs are being paid for time. And I understand the form weve used is commensurate with that of a junior hospital consultant. That’s fair. That’s reasonable.

Now if the PPI doesn’t want payment, wants to do it out of generosity, considers it part of their moral duty to bring their experience to the table, then they can take that payment and donate it to somebody like the Motor Neurone Disease Association and as taxpayers they can gift aid it. So the charity receives 28p in the pound. So take the payment and if you don’t want to keep it, give it to your favourite charity.

Do you think if there was an element of payment we would get a greater reflection of British society if there was..?

No I think the reverse is true. I think that people that want to do something, will do something, will try and do something. But there are people who don’t necessarily have the wherewithal to sort of traipse around the country.

I go London, Newcastle, Sheffield, Leeds. I’ve been to Southampton. Universities and hospitals and other things. I need, as an ordinary person, if I’m going to do that, I need help. I’m not in it for the profit, I’m here to try and to something. But money’s helpful. It pays for train tickets. It buys petrol.

So in that way it wouldn’t detract, it’s something that you can?

No. It would enable. And also it gives, I think it gives the PPI some, some status or credibility. You’re not here under sufferance, you’re not being tolerated. You’re valued. Well pay you to be here. That’s how much we want to hear what you’ve got to say. And I think that’s a good message, not only to the PPI but to the people listening to the PPI.

I think it’s really important that people are able to be involved. Sometimes that means that they do need to be paid in order to make that happen. I think the benefit system in this country is so weighted against people doing this sort of involvement and getting any financial benefit from it, that that is a real pity. That I mean for me when I’ve been involved, I mean for a number of years I was self-employed as a trainer and so if I was going off to spend a day in London at a funding panel, I might have to turn down work to do that. If I wasn’t getting paid for being on the funding panel then I couldn’t have done it. So it was important for that reason.

It is a thorny problem, because I am also aware that I’ve been on other things that I’ve been, I’ve not been paid for, that I’ve just done because I was interested in, and I thought they were worthwhile and useful things, and I don’t think they were less worthwhile because the funding wasn’t available to pay me. But that said, I’ve been on other things where the funding hasn’t been asked for, for participation and then participants are invited saying, Oh but we haven’t any money. And that’s not alright, actually. If you’re wanting people to be involved, you need to think about it and plan it. I get quite cross when I see on funding applications that weve got public involvement, but it’s Mrs So-and-So and she doesn’t want to be paid. That’s great. If you’ve got somebody who wants to do it for nothing, but what if she gets ill? Does that mean you can’t ask anybody else if they need to be paid? You can’t ask anyone who’s working.

One of the big holes in involvement is working age people. And how are you going to get people who are working age involved if they have to take time off work and they’re not compensated for that? So, for me, when funding bids go in, they should always have an allocation for paying participants, even if those participants then don’t need it and you send it back to the funder. That’s fine.

My feeling is that the, the amounts of money that would be needed to pay the, the lay people within the process are very, very tiny. A lot of lay people who get involved do not want any payment and they would turn it down. But I feel that if you don’t offer the payment and I think it should always be offered. If you don’t offer the payment, then you exclude some groups from that involvement and that’s the thing. If involvement is going to be sensible and relevant and, and pertinent then it should potentially be able to involve any member of the general public. For some people the time and the payments are very, very important. They need not just to fund travel, but it might be to look after dependent partners or children that need to be looked after.

So I think it should be offered. It should be offered at a reasonable level to recompense patient’s input. And the question about whether or not that payment interferes with their benefit payments, so that’s another issue that’s important and I wish that the government would sensibly address that. Because it, the, there is some talk that anybody that accepts payment for involvement in, in, public issues of this kind, like cancer research, but other, other types of involvement, would automatically lose entitlement to benefits. That’s, that’s blatantly and obviously wrong. I wish the government would address that sensibly, to make sure that the hard to reach groups have a voice.

So are you paid for everything that you do?

Almost everything, but occasionally I get trapped, if you like, and I think I’m going to get paid and I’m not because I haven’t, because I’m so used to being paid it’s just that now you have to keep it went through a phase when people automatically paid you, would say, “And you’ll obviously want money for your time and this is what we can afford” and whatever. But the , the money for the time right, the clock is now turning back the other way because of the recession and the changes in the NHS, and lots of people are coming on who don’t automatically think it’s right that people should be valued for their time. Or rather, they can be valued by their time if they’re paid travel expenses, if you’re lucky. And so I mean, for example, I’ve just had a recent case of somebody who wanted me to, who invited me to go to an all-day meeting in London and I could see no, nothing about costs or fees or anything. So I wrote back and said, “Well I would expect to be paid for my time and my travel costs”. And this woman wrote back and said it was a government, a grant from the government department that they were using which was only for venue and lunch, OK? But as they wanted me to be there they would find some money to pay my travel, which instantly you think, ‘Well, why didn’t they ask the government for the grant, for the fees, and the costs?’ They just haven’t got it and this is about mental health apps, as in mental health applications, which I mean, it would be quite interesting if I was paid to be there but it’s not interesting enough if I’m not.

And how do you feel about that, that sometimes people don’t think that you should be paid?

I think it’s disgraceful. It’s my one mantra because it was so important to me to have got that principle embedded into, and it is embedded in the National Institute for Health Research, you know. There are guides to, how to pay things, and it’s on all the grant proposals – it says how you are going to pay people?’ Not as strongly as it should. I mean, people misinterpret that, but at least it’s there so they can think about the costs of involvement and what, that cost is more than you know. Because the thing is I get really cross about this why should I volunteer my time when everybody else around the table isn’t volunteering their time? And if they’re asked to volunteer their time, i.e. take a day’s holiday or not have any pay for that day, would they want to do it? No, they wouldn’t, and why am I any different, you know? And I have done lots of voluntary work I was Chair of this European network for years which was voluntary, it was not paid. So you know I need to live how am I going to live? I’m not on benefits so I’m not costing the welfare system anything; a lot of my friends are on benefits, are having a very miserable time because they’re being forced into work.

I’m, I am in work but what I’m not getting actually anymore from the mental health system locally, is support to keep me well in work, support to keep me doing what I’m doing now. And it’s very, it’s incredibly frustrating. And also people themselves, service users, you know, they say, “Well we don’t want to work because of our benefits, you know, we don’t want to be paid because it’ll affect our benefits.” And I say, “That’s fine, if you want to volunteer, you volunteer but don’t say that I can’t have any rate for my time.”

No I don’t see any barriers except the financial one which I’ve thrown up already that people there might be a case for it to get some sort of payment. You have to be applied for and at first, as I said, I was so much against it because you might get people joining for the wrong reasons. But I can see now that it, there is a place for it that theres some sort of thing and where people might want to lose their benefits, oh gosh. So it must be some sort of gratia payments that somehow I don’t know how but people who are cleverer than me can work it out where they’re signed for, but they don’t have to pay tax on it because it’s, it’s going back into society. It’s helping, there must be a way that they’re not going to lose their child benefit or whatever benefits they’re getting, they’re like the bottom, but their voice has got to somehow be got to.

I think theres a challenge with PPI in terms of paying people to do it. At the moment there is a situation where we are given attendance allowances or honoraria. Expenses are reimbursed, but that’s expenses or your travel is paid up front someone else books your train ticket, that’s different. I think there is a big problem with paying people because then there is the question around becoming professional and people making a living out of doing PPI, which is absolutely fine if they are professional and good at what they do. But then you become expert patients and to me theres then the question of how representative is a patient advocate or a patient representative who spends all their time doing PPI in order for it to become paid employment. And it doesn’t have to be actually a fixed contract.

You could, in theory, do that now. Many people would argue that somebody in my position is getting pretty close to it. I know how little money I actually make out of it, so I know I’m not. But, certainly it’s there in terms of the time allocation. And so if I were being paid all the time, at a hundred and fifty pounds a day, or whatever, you could make a living out of it. But the reality is that you’re often only paid fifty quid for a day and that you actually have to do a day before in terms of reading a preparation, and a day afterwards in terms of follow-up on emails, and so on. That happens. So I don’t think people do it for the money. I think there is the potential there to do it for the money and I would worry if that were to happen because I think that creates a whole different relationship. At the moment, people do PPI because they are interested in making research better, in adding value to what researchers are doing, and above all else, making sure that the answers to the research question are going to benefit patients. That’s what drives every single person I’ve ever met in PPI. The moment we start getting paid a living wage for it, let alone a decent salary, that will change, and I think that will be a great shame.

Costs and benefits. The cost of this in terms of time for me is huge amounts of hours. Sometimes I receive an honoraria payment. Sometimes I’m paid for bits of work, right? An awful lot of what I do probably is not paid. I view that when I do get paid for some of it, it helps me do some of the other bits. If a researcher phones me up and says, “Would you help? Were doing a, I’m doing some interviews for researchers for some PhDs and post-grad funding for ” I forget, it doesn’t matter what the name is. So here I’m not being paid for that and I’m not looking for a payment for it because I learn so much, right? But I think the bottom line for me in terms of payments is people should always be paid for excuse me their expenses, out of pocket, it’s an essential. Should be paid for, if it’s, and I disagree with others, but my view is if it’s looking at a research study and it’s twenty minutes/half an hour and they just want a quick look, no problems; I’ll do that. I think that’s volunteering. If it’s just going along to a focus group or a one-off thing, if I get a, if they manage to put in funding for giving me a voucher to go and spend in Marks & Spencer’s that comes as a real bonus. If they pay my travel I’m delighted. If it’s local I’ll do it. If they want more than that however, and they want just, “Well I’m now doing it, would you now help in the next stage?” I think that’s getting in to bits that are involving me in more than just a casual acquaintance, right?

If it then starts to be, they’re asking me to look through our list of twenty trial protocols, or they’re saying would I give up a day where I, or a half day where I’m sitting on a panel where everybody else is being paid and everybody else is a professional in his trade, but they want me to be an equal at the table, then I think were moving in to somewhere where honoraria payments in line with INVOLVes advice and guidance, is absolutely sound and right. And that, and some like RDSs, the Research Design Services, have little pockets of money where they give it and then get it back if the researchers thinks… So that sort of credit union is a great way to do that. If the researchers are saying, “Actually I want you to be on the research as a partner or as a, one of the named applicants and we want you to be, to join this trial all the way through and help get us get a focus group”. That’s actually moving closer to work, and at which place then I go into more of saying, “Well actually that’s going to take up significant amounts of my time”. And because it’s work I’d rather move into a payment process so that I then declare that as I would with the honoraria, but actually go into a receipt mode and an invoice, because actually I do make a living from some of this.

* An honorarium is a one-off payment made for voluntary services, which you can be taxed on.