Mary

Age at interview: 60

Brief Outline:

Mary has been involved in PPI for about 20 years. She mainly works in mental health research with local, national and international groups.

Background:

Mary used to work in marketing before moving into the civil service. She currently works as a mental health service user consultant. Ethnic background: White British European.

More about me...

Mary has a diagnosis of bipolar disorder. She had been doing a lot of voluntary work to change services as a mental health service user consultant when a friend said she could probably get paid for doing it. She used to work in market research so had a lot of skills to bring to patient and public involvement in health research. She got involved in a project, which showed her how much she enjoyed research and also how much she knew about it. She soon became known as an experienced mental health service user consultant and began to get invited to work on lots of research projects as an individual or as part of a group. She joined and later became chair of a European network of users, ex-users and survivors of psychiatry, so she has experience working in research at local, national and international levels. 

When she reviews research proposals and funding proposals, Mary considers how service users were included in the planning and design of the research, and said it’s obvious when involvement has been tokenistic. The biggest cost of her involvement is time, but she said she likes doing the paperwork because she can do from the comfort of her armchair. She doesn’t like when she has to set off early in the morning to attend meetings, especially when she has a long distance to travel to them and thinks researchers could be more considerate of how long it takes people to get to meetings when they’re deciding on the start time. 

Mary has also been a research participant before so she knows what it is like to take part in research. She sometimes hasn’t felt valued as a participant, and would like to encourage researchers to think about sharing individual and group results with participants. She also thinks that ethics committees can be patronising and over-protective when it comes to research about mental health service users, and believes people should have the right to make their own decisions about taking part in research. 

Along with colleagues, Mary was involved in developing a report showing how service user consultants should have their time recognised and rewarded. She thinks it’s very important that service user consultants are paid for their time and contribution. She has done a lot of voluntary work in the past, but tries to be paid for all the work she does now and thinks that researchers and clinicians should think about paying people when they are costing research projects. She feels cross if she’s at a meeting and she’s the only one who isn’t being paid. She said that involving service users makes research more interesting because it includes the human aspect of research. She’s proud of her experience with her illness and said, “My lived experience is very important and gives me credibility”.

Mary wanted to use her previous background in marketing to set up as a paid mental health user consultant.

It astonishes me how long it is, how long ago it is because I'd been doing a lot of voluntary work on consultation – changing services, that sort of thing – and a friend of mine in [place name], she said, who was already doing this sort of thing as well, said, "You know you can get paid for this and with your marketing, market research background. You know about research and therefore you could be doing research and getting paid for it, rather than sitting around a table in a meeting with unpaid people – well you're the, one or two unpaid people, the rest paid – and your opinion is valued, and it's just as worthwhile as the state of them." 

Well first of all I turned myself into a proper mental health user consultant by going to what was called Great Western Enterprise at that time and I got the Enterprise allowance and I was told how to do accounts and that sort of thing, even though, because I had a business studies qualification, I already, it was a good refresher for that. So, I was fully fledged as somebody who needed to be paid. And then of course this was quite novel that there was somebody who actually wanted to be paid for her views. 

Mary is proud to have helped edit a book on survivor research; she has also reviewed a book based on a PhD study she took part in.

I’m very proud of ‘This is survivor research’ which was a book that I helped edit. I was one of five people that edited this book, and I don't know if you know about being in a book or editing books – it takes a long time; and so that came out a few years ago and there's some other books since. But I've also been, written chapters in various publications as well – one about employment; how I got to be self-employed and the things to look out for. I've also through, in a publication called, 'Women who live with Drink,' because I was a woman whose husband was an alcoholic. So I presume I've sort of got a ‘carer’, if you like, hat as well. And that was based on a PhD dissertation that I'd done with somebody’ and then they wanted to publish it in a book’ and asked my permission if they could’ and they gave me another name which I was so cross about. 

So, I wrote about the fact I was cross about being anonymous in a publication that was, this was psychological stuff. So, and they asked me to review the book and to see whether the, because it was testing various approaches and it was very interesting. But I haven't really, despite of that I think because of the sensitivity around me and drink and everything, I think people, even though I'm very keen to put my name on it but nobody else wanted to put their name, so I just had to go along with it. But it's always rankled, that nobody would know it was me, unless they were pointed out the.

Why's that?

What being anonymous?

Yeah why does that annoy you?

Well it's because I'm proud of my experiences. It's me, it's my experiences and I own it. If I didn't want to talk about it, I wouldn't, and it wouldn't you know. But I mean, I suppose the other people they had children and all the rest of it, and that they might be upset about what they read. But I just, it's not my style to be anonymous or to be, I'm very inclined to stick my head over the parapet and see what happens.

Mary feels paying people for involvement should always be included in grants. She does not see why she should not be paid just because people on benefits cannot be paid.

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." 

Mary is passionate about encouraging researchers to take user involvement seriously.

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

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

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

Being able to demonstrate impact is important. Current evidence about impact is often dismissed as anecdotal but Mary thinks practical examples are useful.

Can you tell me a little bit about what you think the impact of PPI is, and whether or not we can measure it, or can we understand it in a greater way?

Mm well actually I'm involved in a, there's a currently a bid out to measure the impact of PPI as [name] at [university name] is putting this bid together. And it's out for consultation or whatever, at the moment it, it's. And that is actually that, to find tools that measure the impact of PPI because the only way to get it more embedded is to actually be able to point to something that shows. Because at the moment it's dismissed as anecdotal evidence and I don't know why anecdotal evidence doesn't count, you know. It's because a lot of the tools that are used in research, clinical trials in particular, are validating measures that other people have done, you know, validating measures and a lot of them don't make a lot of sense. But they, because they're validated they're used, and you get ten different measures or something and when, in fact, a bit of anecdotal evidence would say that, in fact, either you need to draw a new tool or, you know, why not ask people what they think and then take it from there? 

Mary calls herself a ‘mental health user consultant’. She’s happy with ‘patient’ and ‘lay person’ too, but it’s confusing when retired professionals on ethics committees are called ‘lay’.

[laughs] I think the best term to describe yourself is the one that you're comfortable with. There doesn't have to be a collective noun – for example, service users - it should be mental health service users or mental health service user. Because then that defines you as somebody who uses mental health services, and then it's ex-mental health service user. Or there is the more radical campaign – user survivor; somebody who currently uses mental health services but also feels that the treatment they've been given is, means they've had to survive the system, rather than being helped at all. Or you can actually be a survivor and feel you're helped by the system. It just, it's what you feel, people detest ‘service user’ because, or when it's shortened to ‘user’ in particular, because they say it’s like a drug user or, but I've never felt that. I mean I call myself a ‘mental health user consultant’, and that to me is, means I'm a user of mental health services. I should say ‘mental health service user’ but it's a bit too long. So I'm very comfortable with mental health user consultant – it's worked for me, people know what it says on the tin. 

Patient and public involvement – I'm quite happy with it. But I've lived with it for quite a long time, and so I know what it means and what it's meant to mean. And sometimes I'm ‘patient’, sometimes I'm ‘a public’ and you know. I actually quite like the term ‘lay person’. I think that is, I'm trying to reclaim ‘lay’ if you like, because again going back to ethics committees and other things. The people, they're all meant to be lay people but they're retired doctors; they're retired nurses, they're retired. So, they're not lay at all, even though they've been retired a few years. And, I just think we need to do something about ‘lay’ and I think lay would be a good way forward. 

Mary said researchers shouldn’t be afraid to involve people. Even though she has a mental health problem, they don’t need to wrap her in cotton wool.

I think my message would be do not be afraid, we are human and we are very willing and able to listen to you, and together we collaborate for a better future for everybody. You know, just because I've got a mental health problem doesn't mean to say I've got two heads, and I'm not so fragile that you can't, you don't have to keep me in cotton wool. And I think if we, it's all to do with talking together, working things out, and I think that the research you do would be better if you invite people like me to collaborate and co-operate with you.