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Rosie

Age at interview: 55
Brief Outline: Rosie has been involved in health research as a mental health service user for about 12 years. She began by working as a service user researcher after she was diagnosed with bipolar disorder.
Background: Rosie is divorced. She is a PhD student researching patient and public involvement in research. Ethnic background: White British.

More about me...

Rosie was training to be a psychotherapist and working in the voluntary sector when she was diagnosed with bipolar disorder. She was unable to continue with her training and worried she might never return to work. As part of her recovery, she decided to volunteer with a local mental health charity through which her involvement in health research began. She got involved in a research project as a service user researcher interviewing others with mental health problems. The project was supportive, informal and friendly, and helped her rebuild confidence and adapt to her different identity. 

Even though her initial reason for getting involved in service-user research was to rebuild her life and find a meaningful occupation, Rosie soon found she enjoyed it. Getting involved allowed her to reconnect with some of the skills she felt she lost during her illness. She also made lasting friendships with her new colleagues with whom she shared common interests and experiences. Some of the projects she worked on in the beginning were not research projects, but involved delivering self-management training to others with bipolar disorder and interviewing health professionals as a clinical governance reviewer. Doing these things helped Rosie feel positive and that she could work again without becoming unwell.

When her Disability Living Allowance ended, Rosie successfully applied for a position as a service-user researcher. She found some parts of this job very challenging and learned a lot. She thinks service-user researchers can benefit research because they bring their experiences of the health problem and how it affects their lives, and they ground research in experience. They can improve many aspects of a project (e.g. recruitment) by ensuring that documents are written in a sensitive and easy to understand way. 

Over the years, Rosie has progressively become more involved in PPI. She thinks she is quite an easy person for researchers to include because she gets on well with others and has relevant skills and experience. She has commented on various research documents (e.g. reports, funding proposals and patient information sheets) and has been a co-applicant on funding proposals. She has also been involved in the planning stages of numerous research projects, on both formal and informal bases, and has collected and analysed data. Currently, she is doing her PhD, which is looking at how service users and researchers can work together more effectively. Even though she is now a user-researcher, she believes she can still draw on her experiences of being ill because she is still living with her condition.  

Rosie thinks there are a variety of ways that researchers see patient and public involvement in health research: some believe in its value and always include service-user input; others may think it’s a good idea, but find it challenging to include PPI in their work; and some may feel there are types of research that aren’t appropriate for public involvement. But Rosie thinks most health and social care projects will benefit from having PPI input. She would encourage researchers to work with service-users because this can improve projects.
 

Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.

Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.

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OK so INVOLVE is the national advisory group, public involvement in research so that's not just health research it's health and social care more broadly, and it's now part of the national institute for health research, so it's part of NIHR and their…INVOLVE runs as, so there's a small group of staff who, you know, are paid and it's a director and about, I don't know, there must be about eight or ten of them or something. But basically it's a membership so you apply to become a member, which I did probably eighteen months ago and it's, you know, it's, so they had a round of, they advertised for members, so they wanted to attract some new members. Quite a lot of people applied and you know there's an application and you know recruitment process basically. So, and I was fortunate to be, you know, to become a member and I guess, I mean for me that's really good because it means that you; so and it works so there are two or a couple of meetings a year, maybe three, never remember that, and so it's an all-day thing in London and once a year there's a two day symposium and every other year they have this three day conference that they run which is all about public involvement in research. 

And what's good about that is that, you know, so they bring issues and changes mainly these days, changes to the infrastructure, you know, NIHR – changes, there's going to be a new… the latest thing is this academic health sciences network that everywhere is going to have, you know, and how public involvement needs to be part of that and, you know, so there's, so they bring issues but the members can also raise issues and they have work streams . So I've been involved in a working group and they are developing; so they've got a website with lots of guidance on it which is accessible to everyone but this bit of the website is to create a map so that organisations or groups that are specifically interested involvement in research can be on the map and that you can find, you know, so that, so you could find it by your, by health topic or by area. 

So it's really a way of trying to link people up better. You know so I've been in a project that's been involved in a project that's developing that bit, the website. So there's actual bits of work and…but you know we have these meetings and people can bring up issues. Effectively it's a way of I suppose people who are professionals or interested in this area, you know, as a quite strong part of their professional life to come together and they're very clear about there has to be a, you know, quite a large number of service users and carers and members of the public more generally, and it's, it's a lovely organisation, it's really friendly, it's really welcoming, it's very interesting and I really enjoy it every part of it, it's great. 
 

Rosie volunteered at a local support group to help her own recovery. It was chance that she got involved in research through the group.

Rosie volunteered at a local support group to help her own recovery. It was chance that she got involved in research through the group.

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I was ill for a couple of years, several episodes of illness and diagnosed with bipolar disorder and as a consequence of that I stopped being able to train as a psychotherapist. I was not able to work so I was in, after this period of being severely unwell for about a year, four episodes of illness. I, you know, I was then at home on benefits including disability living allowance at the time, and as I began to get a bit better, you know, I sort of think, you know, began to think, 'OK what's going to happen next?' and I think at the time, you know, I felt very , well I felt very shocked. I mean, you know, being diagnosed with a serious mental illness is very shocking and even though I knew something about mental health stuff it was still pretty shocking and I didn't think I'd ever work again. 

You know so it really changed, you know, I've lost my confidence and I thought, 'Oh my god I'm going to be ill forever and I'm never going to be able to do anything.' But eventually time went on I gradually thought, 'OK I need to do something,' and because I'd worked in the past in the voluntary sector, in a charity, I knew there'd be probably be voluntary stuff around and I pitched up at [name of charity] which was down the road, you know, local to where I live so I could walk down there because I wasn't allowed to drive because of being detained, you know so it has all these kind of massive implications really. And a couple of things I thought about getting involved in: the first – they had a Helpline and they train people to be on the phone to people on the Helpline. I considered doing that but decided that I didn't feel up to it and they had a research project which was a user focus monitoring project going on there at the time and I got involved in that instead; and that had already started, they were already interviewing people and it was focused on inpatient care and acute mental health wards. So they were interviewing people and so they'd already produced the topic guide etc. but I did a bit of data collection and then was involved in helping to think about it and write it up. 

So that's where I started and it was completely chance, you know, that that was happening there.
 

Rosie helped collect and analyse some research interviews, and implement findings. She chaired the implementation group.

Rosie helped collect and analyse some research interviews, and implement findings. She chaired the implementation group.

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…but because it was a user led and designed project, you know, service users were doing everything and, you know, I think once the chap guy, who was, he was a paid worker but he was also a service user; once he realised that actually, you know, my interviewing…I mean I'd interviewed people in my prior existence, that's a thing I could do that reasonably sensibly. You know he was quite happy for me to just join in really, so that's what I did. You know so yes I collected data and then I was a bit involved in the analysis of the data and then , and in sort of commenting on some of the drafts, I didn't actually write it, but quite a few of us commented, and then following that project there was a local project in [place name] which got set up which was looking at implementing some of the findings, it wasn't just from our project, it was , it was based with the local mental health trust and so I was working with some staff in a committee which I chaired which was, you know, sort of relatively surprising to me, and you know trying to…in fact what we ended up developing was an information booklet for the acute wards. Originally we were doing it for just [place name] but then because of changes in the Trust it turned out to be for the whole Trust.

So, you know, that was, you know, I was involved in that end of the project of sort of writing up findings and then implementation work that happened afterwards.

And you said there about chairing a committee which was surprising. What was the surprising element of that?

Well I suppose, so in a way, as the main part of the project had finished and so, you know, there was still some interest in working; I can't remember, you know, there's so many different NHS initiatives but it was one of these things about improving services and so there was an idea of having a little, a group to look at service improvement as part of clinical governance in the acute wards and I was, got involved in that which I was very happy to do. I suppose the surprising bit for me which, I mean it was, it was good for my confidence but I ended up chairing that group as a service user when there were clinicians, you know, there were clinical people on the group as well. You know so that was the bit that surprised me I think. It was fine and you know I suppose because I'd been an administrator in the past, you know, I'd been involved in running meetings and actually I suppose in a way that…so it was like it, having those opportunities allowed me to reconnect with skills that I had had in the past so I could do them and I'm fairly tactful so I was reasonably good at trying to balance the sort of user and professional contributions; and other people were really helpful, you know, it wasn't a particularly difficult group but you know it was another way in which I was able to kind of build my confidence I suppose.
 

Sometimes researchers who have a particular condition act as lay advisers. They have a legitimate perspective, but Rosie wonders if ‘insiders’ can be critical enough.

Sometimes researchers who have a particular condition act as lay advisers. They have a legitimate perspective, but Rosie wonders if ‘insiders’ can be critical enough.

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

Involvement is about bridging the gap between researchers and patients. Some roles don’t require much training, but helping carry out research might.

Involvement is about bridging the gap between researchers and patients. Some roles don’t require much training, but helping carry out research might.

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

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

Rosie enjoys working with others, but it can be challenging. She feels for the researchers when other users have a confrontational agenda.

Rosie enjoys working with others, but it can be challenging. She feels for the researchers when other users have a confrontational agenda.

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…I think probably the most difficult things that I found is feeling frustrated with kind of meetings and with other service users and not agreeing with them and thinking they are being unreasonable and , you know, those sorts of inter-personal difficulties and differences which, you know, I find more difficult to manage. 

So it's not so much that I've been upset by the things that I've done, it's more like the, you know, in trying to have a discussion about something with a bunch of other mental health service users, you know, we've practically had world war three declared or something, do you know what I mean? 

You know I think it's part of the territory and actually that's probably the most difficult thing to manage, you know, that people, some people are, you know, I mean not only have they got, you know, views that you don't agree with that other users don't agree with but they've got their own agenda, they're here to get, you know, to make their point about X whether X has got anything to do with why anybody else is in the room or not. You know and you and other people have got to try and deal with that, you know, so I think that's the, that's the more current emotional difficulties and I think those are some of the reasons that public involvement is challenging because some people, some, you know, as with any group of people some people are easier to work with, are more co-operative, are more able to join and, you know, say things but be part of something and some other people are much confrontative or oppositional or critical, you know, and managing that, you know, can…I mean I've been in mental health meetings where people have, you know, they've been poor researchers doing something and some service user has said, you know, "You're like the bloody Nazis." I mean that's really difficult to be, now I know, you know, you can, you can intellectually, you know that that person's had a bad experience, they've felt, you know, controlled by mental health; you know you can understand it but in that moment, I mean a) that's horrible for those professionals to just get all that anger, you know, and far worse than that I have to say, I've heard, you know but that's a real difficult, but even if you do understand it you've still got to manage the situation and there are lots of other people who are all going, "Oh my god," you know. That's why it's hard.
 

Involvement has rebuilt Rosie’s confidence and supported her recovery from mental illness. Now it has become her career.

Involvement has rebuilt Rosie’s confidence and supported her recovery from mental illness. Now it has become her career.

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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. 
 

Rosie still has bipolar disorder but hasn’t used services for 8 years. She feels she’s in a better place to advise on some aspects of suicide research than someone who is at active risk.

Rosie still has bipolar disorder but hasn’t used services for 8 years. She feels she’s in a better place to advise on some aspects of suicide research than someone who is at active risk.

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Because this is all quite complex, you know, we're talking about, you know, health research itself is complex I think involving the public is not a straight forward thing to do particularly in not all areas. So particularly like in acute care, you're doing a breast cancer study, maybe become completely obvious who you involve and there may be loads of breast cancer organisations out there that you can just send them an email and go, 'Are there any patients?' you know and there you are sort of… do you know what I mean? 

So for example one of the things, because now I'm, you know, obviously in a way quite a professionalised public involvement person. I still do act as a mental health service user but I haven't used services for eight years. I mean I still think I've got, I've got bipolar disorder, I don't think anybody would say I haven't got it, certainly no psychiatrist would say that and I think I still have vulnerabilities but I'm fortunate in that I've been well for a long time and I no longer take any medication. 

So in some respects if you're doing a study about current mental health services, people's experiences of them, I'm clearly not an appropriate service user to ask. But in other situations, so for example in the suicide programme; I've never actually tried to kill myself but I've wanted to kill myself and I've had quite a lot of the, you know, I've been clinically depressed, I've been detained and actually because some of the components of the suicide programme actually look at suicide methods and how fatal different methods are, actually I, you know, we think – this is me and the people who I do it with – you know it would be very inappropriate to involve people who are an active risk of suicide, of harming themselves or killing themselves. You could not be, you know, it wouldn't be right to involve people like that in that, those components of the programme so actually the fact that I'm a bit sort of back from my experiences quite helpful.
 

Rosie describes how getting someone from the traveller community involved in a specific project made it more likely to appeal to other travellers.

Rosie describes how getting someone from the traveller community involved in a specific project made it more likely to appeal to other travellers.

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I mean many people, so in this area many of the people who are involved are white, middle aged, middle class, well educated, older – retired or you know. 

Now I think those people, we, you know, I guess I'm one of them, we bring something, you know we have a voice but that we're not a very diverse, you know, it's not a very diverse group of people. Now in some situations that may matter less but if you were doing a research… so one of my, the projects at [name of charity] , we were looking at access to mental health services for people who get labelled as being hard to engage and one of the targeted populations which exist is travellers, I mean, you know, we got gypsies and travellers on to our; a gypsy and traveller onto our advisory group and we completely changed the way that the, with her advice, how we went about recruiting people. Because the way we were planning to recruit we'd have never recruited any gypsies and travellers and we had to go out to sites and with this member of the community who knew people who would then introduce us to people and then they'd talk to us you know. So we had to do something completely different. Well, you know, if, so, you know, if your research is trying to do something about access to services or, you know, people's different needs or diversity of needs, you know, you've got to make an effort to not just get the usual suspects like me.
 

Rosie describes how patients can improve recruitment to research

Rosie describes how patients can improve recruitment to research

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For example one project I've come across here is a project that's about bloodstream infections and it's a very scientific project, well it's not one project, it's a whole bunch of things but, but actually they've had…. and involvement isn't their culture but they've had some really helpful input about recruitment because most of the people they want to recruit into this trial are in intensive care and how they manage the recruitment process , so actually I think what they've decided is that, and their advisors felt it was completely OK, for example, to just put everyone in the study who's relevant and then they then, you know, later, when the person is slightly more recovered, they go through, you know, they ask people. 

Now that was, you know, that's go through ethics but that process they discussed the ins and outs of that, that was really helpful. So, you know, I think, you know, clearly and obviously there are lots of things that as service users and patients, you know, you, you know, there are scientific and technical issues…

…but, you know, we don't know how to do that but if you're going to be asking people to do things or asking people to lie in scanners for forty five minutes or whatever it is, actually you need to ask somebody is that, can somebody do it for that long, can they stay still for long enough for you to do your…you know so there are all sorts of ways I think.
 

Some people like to be called ‘service user’, others don’t. Rosie likes ‘research partner’ but it could mean other university researchers. In the end what you’re called doesn’t matter.

Some people like to be called ‘service user’, others don’t. Rosie likes ‘research partner’ but it could mean other university researchers. In the end what you’re called doesn’t matter.

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The terminology is a complete nightmare, it's a complete nightmare. Again I think it's very dependent where you come from so in mental health you can never call people patients or most people don't want to be called patients, so it's always service users although lots of people don't want to be called service users either so lots of people say they want to be called survivors. So even just in mental health there's a massive argument really that goes on runs and runs about this I think. You know and different people just, you just have to decide, you know, in the end like in your… I quite like the term research partner which is the term we tend to use here although I think it can be ambiguous because , and in one group I know they call them patient research partners, you know, which is less ambiguous, but I think it can be ambiguous because I've used that term to an academic researcher and he said, "Well my colleagues in Manchester are my research partners," you know so it's…do you know what I mean, it's not an unambiguous term in that way. But I guess it's more, it kind of gets around this whole patient/user problem. I mean a lot of people like the term experts by experience but that actually is quite a difficult term, you know, it's not an easy term to use in writing or, you know, in some context it works alright but other people it doesn't. You know I mean I just, I, what I try to do, the way I deal with this myself is I try not to engage in the discussions about what's the right terminology because I don't think we can ever get there. 

I try to adapt the terminology that I use to suit the people that I'm with so for example in one of my current PhD case studies they talk about PPI all the time, that's what everyone, they've had PPI groups, they talk about PPI, so that's the term I use. You know I just kind of surrender to the environment in this sense and I don't think, you know, I suppose where I've got to with this is I don't want to waste my energy talking about terminology, I'd rather do the work and, you know, in a way I don't really care what I'm called, you know, I care more about what the job is I'm doing and whether it's making a difference.
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