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Jennifer

Age at interview: 58
Brief Outline: Jennifer has been involved as a patient and public representative in health research for about five years. She became involved after she began caring for her mother when she developed dementia.
Background: Jennifer is married and has two children, aged 38 and 36. She is a housewife. Ethnic background: Welsh/Jewish.

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Initially, Jennifer got involved in PPI when she became a governor in her local health care trust. Knowing that she was a carer for her mother who had dementia, a friend introduced her to the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN). She took up the role of patient and public representative after being interviewed for the position. Initially, she felt daunted by the experience. She didn’t really understand what was going on because the other members used a lot of technical terms and jargon.

Jennifer invests a significant amount of time in reviewing research proposals, spending about a week reading each one. She reads them bit by bit and eventually starts from the end and reads them backwards because she feels this gives her a better understanding of the proposal and highlights what isn’t clear. Her work also involves a lot of travelling, which can be tiring and expensive, and Jennifer feels very frustrated when her expenses aren’t reimbursed on time. She said, “It’s not the money, it’s the principle of it. We’re doing this in our own time…and it would be nice to be appreciated”. She also felt it was important for researchers to recognise the work PPI representatives put in by feeding back to them what impact they have had on their research. 

When she started with another research network, Jennifer was assigned a mentor, although as she knew what her role entailed, she felt she didn’t need one. However, she thought new PPI representatives would find a mentor helpful to understand what to do in the role and to iron out any problems they may have, including things like reimbursement of expenses. 

In doing her PPI work, Jennifer draws on her experience of caring for her mother. She always thinks about what taking part in the research would be like for participants. She thinks having experience of being a patient or carer is important for people involved in PPI, but they should also have some scientific knowledge. She said PPI is not for everyone, but that she has learned a lot from the work she has done. 
 

When she reviews a research proposal Jennifer reads it paragraph by paragraph, making notes, then reads it again in a different order.

When she reviews a research proposal Jennifer reads it paragraph by paragraph, making notes, then reads it again in a different order.

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The first thing I do is how long is this? And they're all pretty much the same in length. They're all, you know, a lot of documentation there. I read it and I read it again and then I start slowly then. I think, 'Right I'm going to do this now.' Not always in the same day and then perhaps the following day I'll start and I'll just read a paragraph, then another paragraph then another paragraph and another paragraph and sometimes I go back, depends, depends how it's written. Sometimes it can be easy, sometimes it's a little bit difficult and then I start writing, jotting things down then I won't forget, you know, my thoughts. And then near the end I start to read it backwards. I start from the end, the appendix all the way up, all the way back to the beginning and then I get it. I understand it better by reading it backwards than forward, you know, from the beginning.

But I always jot down little bits and pieces then I won't forget and I have pages and pages of that about things I jot down. Then afterwards I have to try and piece it altogether, write it out, then I can write it all on the computer then to forward on to the research network.
 

Jennifer has sometimes cried in meetings about her mum’s experience, but in a way that has helped researchers understand the impact of dementia.

Jennifer has sometimes cried in meetings about her mum’s experience, but in a way that has helped researchers understand the impact of dementia.

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I was asking you about, you know because of your experience of dementia and sadly losing your mum.

Yeah

Were you sort of prepared for the emotional effects of being involved in dementia research?

No I wasn't, no. There's been a few meetings I've been to where I've broke down. But that's good because some of the researchers, you know, they understood how I felt and what dementia was really all about, you know, living with it, not working with it, but actually living with it and I think it brought a lot of to their attention. But they were very good, you know, and yes I did break down at one or two, a couple of times yeah. You're bound to do, aren't you? You know it was so early days, I still do sometimes, but it's getting better but the emotional side yeah mm. 
 

It’s still hard to understand what’s being discussed. Jennifer gets little feedback and sometimes wonders if anybody really values what she says.

It’s still hard to understand what’s being discussed. Jennifer gets little feedback and sometimes wonders if anybody really values what she says.

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Again that can be very technical as well because you get a lot of the researchers attending these steering groups and they're in a little world of their own and they're talking between themselves at the table. You're here as just a member of the public and even now I have no idea what they're going on about, it's very, very difficult. They do, I do ask them if I'm not quite sure, I do say, "Excuse me can you explain that a little bit more to me". And they do try but it's still, it's still a bit a hard to understand. 

I sometimes feel am I there because they really want me to be there, or am I there because I, they have to have PPI? You know, do they really want us there? At the end of the day, you know, you're thinking, 'Well, I'm doing all this work, are they really listening to what I'm saying here?' Although, like I said, there was one, that the last study I did they have taken it on-board, they have taken it off and they are re-doing it just to see if they can, you know, recruit more patients, so yeah.

Yes so we've, I've had one feedback all the time you know.

In the last five years.

In the past five years from one, from one researcher yeah.

And how does it feel not getting feedback?

Mm well you think to yourself, 'Has this been labour in vain? Have you just looked at it and just thrown this, you know, not bothered,' I don't know, you just feel, 'Has it been worthwhile?' It would be nice to have had some sort of feedback to see how our comments, you know, what are their thoughts on our comments but no, not many.

And how do you think that could be changed?

I think, I mentioned at the end of the study and the comments, perhaps the end of the study, they could put their findings in more of, like an ordinary newsletter, a forum newsletter where everybody can see it rather than the British Journal, you know the scientific journals where nobody sees those magazines much, not many. 
 

Knowing you’ve been listened to and you’ve made a difference matters to Jennifer.

Knowing you’ve been listened to and you’ve made a difference matters to Jennifer.

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Well like I say I mean I did this piece of research on 23rd Jan and although I've not been acknowledged for it but I've been acknowledged where the researchers have taken on-board and they have listened to what I've said about this piece of research and I think if they take it, they've done what I've said and it works and they do, it does help to bring more patients in, well I think I've done a good job, I think it's worked.

Yeah.

That's all I can say, it's just this one piece of research and I said, I said to – oh you tell me and I'll tell you – [name]. I said, "Will you please keep me informed on what's gone on with that piece of research, let me know the outcomes?" I mean obviously it'll take time. I mean this was only January, they had to take everything off, re-do it all and then they'll have to wait now to see how many patients they recruit now for this study, but if it works and they do… recruit more, a lot more, then I think, well I think they should then listen to what we have to say yeah, and you know if it works, yeah it does work, what I said. Not only me, other people as well but yeah I think that's it.
 

Jennifer doesn’t mind spending the time on getting involved, but she would like her expenses reimbursed promptly, just to show her work is appreciated.

Jennifer doesn’t mind spending the time on getting involved, but she would like her expenses reimbursed promptly, just to show her work is appreciated.

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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, we're 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. We're doing this in our own time and it does take our time and it would be nice to be appreciated now, you know. 
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